Need advise re my thyroid

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I have had a thyroid condition since age 10 when I was eventually, after being very ill, diagnosed with an over active thyroid. It was treated with medication and responded well until I was discharged from medical care at age 15. The explanation for the lack of diagnosis? I was deemed too young to have a thyroid problem.

I then deteriorated and spent years going from doctor to doctor being told there was nothing wrong and that my test results were normal, until one day they turned round and said it was over-active. Result? sub-total thyroidectomy. I should have questioned this but thought that at last I would be well so went along with the doctors.

I believe to this day that having that op was the worst thing I could have done and have spent the majority of my adult life being very ill and being told there is nothing wrong with me.

I managed to be put on thyroxine at age 41 but this only partly helped and I have continued to suffer with symptoms of hypothyroid disease.

Last year my Endocrinologist persuaded me to stop taking my thyroid meds, initially I was okay but have now deteriorated back to the point where I have no life again.

The ref ranges for my thyroid are TSH 0.3 to 5.5 - mine is 5.82, Free T3 3.9 to 6.8 - mine is 4.1 and Free T4 12 to 22 - mine is 11.7. my TPO 581.0 (ref <100.0)

Prior to coming off meeds and on 3 grains of Nature-Throid I had a TSH of 0.1, T3 5.4 and T4 12.4.

I now feel dreadful again - what would you advise me to do?

[auto_immune]

Last year my Endocrinologist persuaded me to stop taking my thyroid meds, initially I was okay but have now deteriorated back to the point where I have no life again.

The ref ranges for my thyroid are TSH 0.3 to 5.5 - mine is 5.82, Free T3 3.9 to 6.8 - mine is 4.1 and Free T4 12 to 22 - mine is 11.7. my TPO 581.0 (ref <100.0)
Prior to coming off meeds and on 3 grains of Nature-Throid I had a TSH of 0.1, T3 5.4 and T4 12.4.
I now feel dreadful again - what would you advise me to do?

Hi ignored,
I’m not a doctor, but my advice would be – get back onto the Naturethroid PDQ. Easy to be clever in hindsight, but why did you listen to the endo against your better judgement? You clearly suffer from Hashimoto’s (positive TPO) and an auto-immune disease is for life.... there is no cure, only life-long treatment. Please don’t let anybody tell you ever again that you should not take your thyroid medication. You will need it for the rest of your life. If your endo doesn’t know that, he should go back to med school.

Something else that could be helpful for you.... try a gluten-free diet, even though you are probably not celiac. The gluten molecule is almost identical to the thyroid molecule and your auto-antibodies misidentify and attack gluten in your intestines just as they attack your thyroid gland. By cutting out gluten you will reduce the number or/and intensity of the antibody attacks.... “every little helps”

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Thank you so much for your reply - I suffer from Hashi's? no-one has ever said or agreed that I even have an ongoing thyroid problem let alone Hashi's.

Why did I listen to the Endo? she was very persuasive and the changes to my body which include hair loss (body and head) changes in skin and nails, lack of muscle tone etc I am told are nothing to do with my thyroid. Much researching is starting to show that low sex hormones may be to blame for that - I have been deficient for years, so I thought (stupidly) the doctors must be right and I must be wrong, I blamed the thyroxine for my hair loss so thought I was the one who didn't understand. As I would crawl over hot coals to get my hair back I was easily persuadable.

Now I know for sure that my thyroid is at the bottom of all this, at the moment I am very unwell, can't exercise due to the fact that it causes me intolerable pain, I alternate between sweating and shivering, more hair loss, exhaustion, foggy brain and my eyes are now really sore and red and feel gritty (not a symptom I have eperienced before) there is much, much more.

My cortisol is low, I have an incidental adrenaloma among a host of other problems. My cholesterol is now higher - the list just goes on and on and on. All the while I am told my thyroid is fine - but if I go right back to when I was 10 years old I was told I was fine, if I hadn't had the luck to catch tonsilitus which made me so ill my bulging eyes, swollen neck etc along with amazing weight loss became very apparent, I simply wouldn't be here now.

I have tried gluten free but that isn't the thing for me - years of being told I had irritable bowel ended when I discovered I actually had a lactose intolerance - digestive problems solved almost overnight. I am also intolerant to carbohydrate and if I want to avoid excessive weight gain have to follow a very strict diet, one meal a day with exercise is the only thing that keeps my weight stable but of course it's all got worse since stopping my thyroid meds. If I want to loose any weight I have to try and go the odd day without eating - nightmare. Of course now that I have further damaged myself by stopping meds I can no longer do the exercise I usually do.

I have re started my Nature-Throid but only one grain at the moment as I know I need to take it slowly, I need a good doctor to help me do this properly, something I don't believe I will find as once my Endo discovers I have gone back on meds she will probably dismiss me from care. I feel very alone in trying to resolve this but know that thanks to my Endocrinlogist in less than a year I have undone years of trying to get my thyroid on track - stupid? yes, but this is what conventional doctors in the NHS have done to me, how do I find a good one? I doubt very much I could be that lucky.

[auto_immune]

I have re started my Nature-Throid but only one grain at the moment as I know I need to take it slowly, I need a good doctor to help me do this properly, something I don't believe I will find as once my Endo discovers I have gone back on meds she will probably dismiss me from care.

Well done - and yes, a good doctor would be a bonus in an ideal world. However, you’ve been on Naturethroid before, you already know how to do it properly.... up your dose by ½ grain (not more!) every 4-5 weeks and split the dose am and pm. Go gently up in increments of ½ grain each month and when you get slight hyper symptoms, cut back to your last dose and stay there..... that will be your correct dose. For as long as you feel well and don’t get any hyper symptoms you will not be overdosed. Your TSH will be suppressed, of course, but that is nothing to worry about for as long as your FT4 and FT3 stay inside the ref range. For further info google and join TPA –UK. You’ll be in good hands there.

Furthermore – ask your GP for a mineral and vitamin test. He is not likely to order all you ask for, but be persistent and see what you can get. Ideally you need to have checked: Ferritin, Folate, Magnesium, Zinc, Copper, Vit B12 and Vit D3.... of those seven Ferritin and D3 are the most important figures to know... if need be there are ways to get round finding out the levels for the rest without having a lab test – but to find out your iron level (ferritin) is vital, as is D3, although nearly everyone is low in D3 during the winter and should supplement .... it’s even been on the news recently.
Thing is – if you were low in iron, your thyroid hormone would not work properly.... so if nothing else, you need to find out at least that one.

Don’t be scared – you won’t be alone.....

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Thank you, yes I have just joined TPA and am really hoping they will be able to help me get it right, I feel a bit stupid because I've lived with this since I was 10 and I should have known better, I should also have known not to put my faith in the NHS to help me. I was aware of TPA before but the level of venom toward TPA by conventional doctors I found made me think that conventional was the only way to go. They made me feel I was wrong and used the fact that some of the doctors helping TPA were hauled before the medical council to underpin their case. I listened to them and am now in a complete mess again.

Yes, I do know enough to go steady on the Nature-Throid, I find it interesting that I can take very high amounts of thyroid medication without having hyper symptoms and yet when I tried T3 and followed the Wilsons protocol I became very unwell.

No-one has said that Hashi's was a possibility before, why do you think Hashi's?

I know I have been very low in vitamin D but I know my iron levels were okay, I will ask my GP to re test though. Due to my low cortisol, adrenal problems and very low DHEA and Testosterone (among other sex hormones being low) I am wondering about supplementing with DHEA as well.

It's all got very complicated and I can't see the wood for the trees at the moment.

[auto_immune]

No-one has said that Hashi's was a possibility before, why do you think Hashi's?

The presence of positive thyroid autoantibodies is diagnostic for autoimmune thyroiditis (Hashimoto's) - that's a fact You have positive numbers of TPO, which makes your hypothyroidism an autoimmune condition without the shadow of a doubt. It makes no difference to the treatment though, whether your thyroid condition is autoimmune or not. With Hashi's your autoantibodies will - in the fullness of time - destroy your thyroid gland, and with the non-autoimmune condition you finish up hypothyroid because your gland has stopped working and is shrivelling up for other reasons - same difference.

Well done for joining the group. You will find all the info you need and more there .... just gets to show how much trouble some people go to to bad-mouth an excellent group and their outstanding medical advisors. Must be a real thorn in their sides.... wonder why

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Are you absolutely sure? my Endo has said nothing about Hashi's - merely that I do not have a thyroid condition, OMG, I thought Hashi's was swinging between hyper and hypo, I don't go hyper (to be totally honest I preferred life when I was hyper to how it is now it's hypo!) I clearly need to educate myself on this aspect. I had a sub total thyroidectomy in my twenties so can I still have Hashi's? I can't have - surely there is absolutely no way the doctors (and I have seen a lot of Endo's) could possibly have missed that? I simply can't have surely?

There's an awful lot of bad mouthing anyone who doesn't go along with the conventional doctors attitude, it seems to me after all these years that the conventional doctors are more than happy to leave ill thyroid patients to their own devices whilst scaring them to death about the likes of the TPA - plain wrong.

Are you sure, on the history I've given and the test results that I have Hashi's?

Thank you so much for helping, I note that the experts on here haven't responded to me, I just want to be well, or at least better than I am now. Surely if I have Hashi's this is a strong marker for proper treatment?

[auto_immune]

Are you absolutely sure? my Endo has said nothing about Hashi's - merely that I do not have a thyroid condition,

Positive. Elevated numbers of thyroid autoantibodies classify Hashimoto’s disease. If you had no symptoms at all, the condition might not be overt, but it does not change the fact that you’ve got it. Though some endos say that people with positive AA’s but no clinical symptoms “may at some point in the future develop autoimmune thyroiditis”.... but that’s splitting hairs. It is silly not to treat Hashi’s as early as possible, because an untreated autoimmune condition opens the flood gates for developing further autoimmune conditions. Anyway – you have got plenty of symptoms and a familial history of thyroid disease.... so what is your endo waiting for? – a miracle??

OMG, I thought Hashi's was swinging between hyper and hypo, I don't go hyper (to be totally honest I preferred life when I was hyper to how it is now it's hypo!) I clearly need to educate myself on this aspect.

It is very common to have a hyper period before becoming hypo. I did have a year of that too.... and I know what you mean by preferring hyper to hypo – if it’s not too bad it makes you feel quite “alive”..... pity it’s spoiled by palpitations though <g>
Btw – you are mixing up Hashimoto’s with Hashitoxicosis..... that’s where you swing from hypo to hyper.... most unpleasant condition

I had a sub total thyroidectomy in my twenties so can I still have Hashi's? I can't have - surely there is absolutely no way the doctors (and I have seen a lot of Endo's) could possibly have missed that? I simply can't have surely?

Evidently you do have Hashi’s. The deciding factor is your positive TPO’s. So unless your lab result was fraud, you’ve got Hashi’s. Those AA’s will only vanish when the rest of your thyroid gland is as dead as a dodo. Then they have done what they set out to do and they will disappear. At this point your autoimmune thyroiditis diagnosis will officially become "Hypothyroidism". The term Hypothyroidism is strictly speaking reserved for the end stages of thyroiditis (be it autoimmune or otherwise) - but again, this is splitting hairs. The baby needs a name and whatever you want to call it, your body is still in dire need of thyroid hormone.


There's an awful lot of bad mouthing anyone who doesn't go along with the conventional doctors attitude, it seems to me after all these years that the conventional doctors are more than happy to leave ill thyroid patients to their own devices whilst scaring them to death about the likes of the TPA - plain wrong.

Yep. But perhaps the tide will turn now that the GMC has recently totally exonerated Dr. Skinner from any wrong doing and precedence has been set by the GMC that the use of natural desiccated thyroid is perfectly admissible.

Are you sure, on the history I've given and the test results that I have Hashi's?

LOL..... yes

Thank you so much for helping, I note that the experts on here haven't responded to me, I just want to be well, or at least better than I am now. Surely if I have Hashi's this is a strong marker for proper treatment?

One should hope so..... but no, it is still a question of personal medical judgement. But if your endo says no, what is stopping you from finding a more clued up endo?

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Thank you so much for your help in this, I have a doctors appointment in February and will discuss this with him (my GP is lovely but doesn't know about difficult thyroid cases, he will listen to this I am sure).

I have a number of symptoms that have suggested Cushings and I have been tested for this several times, I had suspected cyclical as over the past two or three years I go into a kind of remmission in the summer, but if I actually am Hashi's would this give some sort of clue to the cycling nature?

Ha ha - I am waiting for a miracle - I think the doctors just wish I would go away!

Thank you so much for giving me another avenue to explore, I've been feeling absolutely desperate, hopeless and helpless lately, now I know what I have said for 30 odd years - I really do need thyroid replacement. In some ways coming off thyroid meds has been a total disaster but it has shown me without doubt that I do need thyroid medication. How could I have been so stupid and how could my Endo have not seen this?

Now - while waiting for that miracle could you point me in the direction of some quality info on Hashi's?

You have helped me so much - and you have given me hope for the first time in ages.