New blood results and how to stabilise a fluctuating tsh.

[Sophit]

Hi All. I have just had my 13 yr old daughters full bloods back after insisting she was still unwell.(suffers with Hashis hypo) Currently on 100mcg and has been for about a year now. Last bloods in Nov 16 showed TSH at 0.30. (Not sure what the other T levels were) however since she has been on thyroxine for hashimotos (3 and half years) her tsh and ft4 are continually fluctuating for example bloods taken 3 months apart showed TSH at 5.12 (t4 - 15.6) her dose was increased from 50 to 75mcg of levothyroxine. her next blood test showed a tsh result of 0.49 (t4 - 22.1) (here she was at her best. Great energy ,weight loss finally, and happy!) Then next bloods 3 months later showed tsh at 3.95 (t4-17.1) She was then dismissed for 6 monthly bloods . next one was 2.63 (t4-14.9) then 4.31 (t4-11.1) 1.71 (t4 - 15.1) and then 14.88 (t4-12.) That last one was when she started the Increased thyroxine dose of 100mcg which she has been on for a year. I do not have a print out of the last 2 bloods as they were done at an out of borough hospitial after we transferred to a new endo. Anyway to be honest the results are pretty much the same up and down in the normal nhs bracket. As mentioned above the last test before the current one was 0.3 tsh. Which would suggest a good level? However it never seems to stay there. Therefore she never seems to find a happy place. My question is with her levels flucuating between high and low within the bracket, how can we try and stabilise it and get it to where she started feeling and looking well (tsh 0.49 and t4 22.1)

We see a private endo in London on Monday as I am still not happy with my NHS one. so will see what he says but I wanted to post her latest results here for any advise etc. Currently she still struggles with constant weight gain, fatigue, bad skin/scalp. I do understand puberty may play a part in flucuating levels and do wonder that if we try to supress the tsh level that she may end up hyper? Also unless she has bloods every month how will I know it's stabilised at that level?

All her vitamin/iron bloods came back ok,except vit d which was at 38.

B12. 540ng/L

Folate 12.1 ug/L and ferritin 18.2ug

Any advise/feedback welcome

Thank you in advance x

Ps. Hope the pic is readable as the print was light grey!

[greygoose]

Two reasons for fluctuating TSH

1. Dosing by the TSH. The TSH is irrelevant once you are on thyroid hormone, unless it goes high. So, get it low, and then just go by the FT4.

2. Having Hashis antibodies. To lower antibodies, try a gluten free diet. Try taking selenium. But, most of all, get her TSH down to zero.

Having a suppressed TSH cannot possibly make her hyper. For one thing, she's hypo, and thyroid glands don't jump around like that. For another thing, even if she wasn't hypo, a suppressed TSH doesn't make you anything. It's not there, so it can't do anything.

TSH, Thyroid Stimulating Hormone. When thyroid hormones are low in the blood. The pituitary secretes more TSH to stimulate the thyroid to make more hormone. The lower the thyroid hormone, the higher the TSH. When the pituitary senses that there is enough thyroid hormone in the blood, it lowers the TSH, so that it doesn't stimulate the thyroid anymore. That's why you want your TSH suppressed when you have Hashis, because the less thyroid activity there is, the less antibody activity there will be.

And, no, a suppressed TSH will not cause osteoporosis or heart attacks in later life, as endos try to argue so that you reduce your dose, that's suppressed TSH caused by over range FT3 in people with Graves, not suppressed TSH caused by taking an optimal dose of thyroid hormone replacement. And even that's only a slight risk. When you are on thyroid hormone replacement, the TSHis suppressed because you don't need it anymore.

But, I've gone on enough for one night! lol

[Sophit in reply to greygoose]

Thank you for your detailed reply. Hopefully the endo will help us to suppress the tsh. X

[greygoose in reply to Sophit]

Hopefully. But I wouldn't count on it. Doctors/endos are terrified of suppressed a TSH, which is why I explained that it's nothing to be afraid of, before he starts filling your head with nonsense.

[Sophit]

Without this sounding the wrong way as its not meant to be co desending at all. Its a genuine question.. How is it that GPs and endos do not have this knowledge? It saddens me that if this private endo (dr mark vanderpump) does not help treat her symptoms then what hope does she have? I feel her childhood has been tests upon tests and getting no where fast. I can't get my head around so much conflicting Info on this subject with patients and ends. People that are suffering are obviously more in the know of how they feel and what works for them as an individual, which if you do not suffer you can not understand...but still if it's a someones specialist subject then surely they are more clued up to the fact of benefits supressing tsh etc....x

[greygoose in reply to Sophit]

But, that's the problem, it's no-one's special subject. Although the name 'endocrinologist' suggests that they are au fait with all hormones, the truth is that they are diabetes specialists, and just have a spattering of misinformation about the thyroid. There are no thyroid specialists.

In order for me to get half-way decent help, I had to go and see an anti-aging specialist, in Paris. Anti-aging doctors do know about all hormones, but there are plenty of aspects of thyroid problems that they don't know - for example, he had no idea about nutrients.

As for GPs, they do one afternoon, in the whole of their seven years training, on the endocrine system - so you can imagine they did not learn very much about the little thyroid. And, very, very few doctors even have the interest to learn more, do any research - thyroid isn't sexy! as I was once told. Unless, of course, they have the disease themselves - but that doesn't happen very often - and even then...

And, of course, there is another element behind all this: money. Big Pharma is making a fortune out of treating our symptoms : statins, beta blockers, PPIs, antidepressants, etc. etc. etc. If we all got well, they would lose several fortunes. Their aim is to keep us as walking wounded - just about alive, but needing lots of loverly drugs to keep us that way! And, as Big Pharma funds medical schools, they decide what doctors learn. And, what they don't learn. And most of what they do learn is false, anyway! And, so, they keep doctors ignorant about thyroid. We, as they say themselves, are their Milch Cows!

Now, that may sound cynical, but, I am as sincere in my answer as you were in your question. I do understand your concerns about your daughter, and it is a shocking situation. But, it is my firm belief that I have been hypo since I was a small child, but no-one ever even did a test until I was 55! I was told I was stupid, and greedy and lazy to be so fat! And, nobody ever thought that - as it was just after the war, and food was rationed - it was a little difficult for a seven year old to be 'greedy', because there was very little to eat - certainly no sweets and chocolate, soda, crisps, cakes or biscuits for me to gorge on. So, shouldn't someone have said, hey, wait a minute... this isn't normal! But no-one did.

The thyroid has always been the Cinderella of the medical world, they profit from us, but at the same time, laugh at us, insult us and treat us badly. This situation isn't new, but it's down to us to make sure it doesn't get old! Stand up for your daughter. Learn all you can about her disease, and teach her how to look after herself. Challenge the doctors, don't let them get away with brushing her aside. I know it's even more difficult when you're fighting for a child than when you're fighting for yourself, but what's the alternative?

I wish you both all the luck in the world! xxx

[helvella Administrator Thyroid UK in reply to greygoose]

Wish they even knew all the hormones that exist! We have seen three added in relatively recent years:

Ghrelin 1995

Leptin 1995

Neuropeptide Y 1982

We have seen skin repeatedly classified as an endocrine organ in one place, and declassified elsewhere.

I shall be amazed if we have got to the end of the line and even know all the substances that should be called hormones. Seems very likely that some of the other thyroid hormone family will eventually be added - T2, T1, thyronamines, ...

[Sophit in reply to greygoose]

Thanks grey goose. That story made my heart sink about you as a child. Seeing what my daughter is going through and how she feels about herself is heart wrenching enough and I can not imagine how it was in a time where there were absolutely no options. and blame was on you for how you were. Thank you again for your time and response. My appt is on Monday coming...Let's see xx