Thyroxine dose going up and up,now suffering an... - Thyroid UK

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Thyroxine dose going up and up,now suffering anxiety.

Jeremy72 profile image
11 Replies

Hi again all,

Well daughters T4 is normal but TSH raised so GP has increased Thyroxine to 350mcg,she is anxious all the time and I would say a bit depressed.

Constantly she asks to be referred to Endocrinologist to no avail.

I really feel there is more than just thyroid issues here,maybe other hormonal issues as well.

Private bloods have been done and T3 was normal,just roller coaster ride between TSH normal and then raised again and Thyroxine going up and up.

I am very concerned as she is only 34 and has not had children yet,and would like to in the near future.

I feel it's important to get hormones stable first.

Thank you for any advise,I have offered to go to the GPS with her to discuss.

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Jeremy72
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11 Replies
Treepie profile image
Treepie

You need to post the actual results and ranges for comment. Normal is not always optimal.

Jeremy72 profile image
Jeremy72 in reply to Treepie

Hi,I realise that,I will get them from my daughter thanks.

Anthea55 profile image
Anthea55

The other important part of the picture is nutrition. Vitamins and minerals must be optimal for the thyroid medications to work properly. It could be that your daughter's thyroxine is not being absorbed or converted properly and that she could be on a lower dose if vits & minerals are improved.

Unfortunately most GPs have very little training in nutrition, but you can get them to check ferritin, folate, vit D, vit B12. Many of us are also short of magnesium and zinc.

It may be worth finding a nutritionist to advise. Go to the BANT website to find a nutritionist near you. bant.org.uk/

There's also info on the ThyroidUK website at

thyroiduk.org.uk/tuk/treatm...

Jeremy72 profile image
Jeremy72 in reply to Anthea55

Hi,yes she is aware of nutrition,her vit D was low and she is on prescribed supplements.

Sadly she had to fight with the GP to do the tests,GP said I will do them to put your mind at rest.Very patronising as she has a BSc in food nutrition and health !!!

ferritin B12 Folate etc were normal,not sure re magnesium and Zinc,but she's pretty on the ball,and tried everything she can to help herself.

Thank you for your reply.

greygoose profile image
greygoose in reply to Jeremy72

What do you mean by 'normal'? Optimal for B12 is 1000, nothing to do with 'normal'. 'Normal' means nothing.

Absolutely no point in testing magnesium. It will always be in-range because of the way the body handles magnesium. But that doesn't mean she isn't deficient.

radd profile image
radd

Jeremy,

Sorry to hear that your daughter is still so unwell.

Is your daughter supplementing the nutrient//iron deficiencies ? ?.. Has she has folate tested ? ? ..

Did you have any diagnosis re the Polycystic Ovarian Syndrome ? ? .. Your daughters symptoms sound as if they fit this criteria.

...[ ... With PCOS, even though other tissues in the body are resistant to insulin, for some reason the ovaries and pituitary gland remain very sensitive to it. High insulin levels cause the pituitary gland to make too much luteinizing hormone (LH), and too much LH causes the overproduction of testosterone, thus hindering ovulation .. ] ...

...[ ... What the researchers found was that the women who had the lowest levels of insulin resistance also had the lowest TSH values (under 2miU/L). Women with the highest TSH values tended to have the most severe insulin resistance. Interestingly, this was not related to weight: subclinical hypothyroidism caused insulin resistance in women in all weight categories ...] ...

hypothyroidmom.com/pcos-and...

Changes in thyroid function can effect sex hormone binding globulin (SHBG) which binds with many hormones. When levels are low, any elevated hormone will be too free and male hormones will produce the symptoms of PCOS.

With regard to your daughters ever raising TSH .... I just don't know ...

The thyrotropin receptor (TSH receptor) and associated protein responds to thyroid-stimulating hormone (thyrotropin//TSH) and stimulates the production of T4 (thyroxine) and T3 (Triiodothyronine). Perhaps there is some sort of hormone resistance going on for the TSH is to keep rising whilst thyroid hormones require replacing ...

If thyroid antibodies have only been tested once, it would be prudent to retest as levels can fluctuate.

I don't mean to be condescending and it wouldn't account for such huge TSH elevations but ....is your daughter taking her pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements ? ? .....

You could ask your GP to test all sex hormones and then email louise.warvill@thyroiduk.org.uk for a list of sympathetic endos//doctors that members have had positive experiences with.

Jeremy72 profile image
Jeremy72 in reply to radd

Thank you for a very interesting reply,when she was a teenager I recall taking her to the GP with ? PCOD as she had all the symptoms including hirsutism,painful and heavy menstruation.

I will offer again to go to the GPS with her as I think she finds it hard to be assertive in asking for tests as GP is a bit dismissive.

According to GP there is no limit to the amount of thyroxine she can prescribe.

I think having all hormones tested is the way forward.

Ps yes she has done much research and does take her thyroxine first thing on waking with water etc.

That's why we are feeling we are getting to the end of out tether,as apart from full hormone screen,everything she can do has been done.

I really feel as things do not seem straight forward she would be better seeing a endocrinologist.

I have been hypo thyroid since partial thyroidectomy 30 years ago,always been monitored and treated by GP and am only now needing 150 mcg thyroxine.

I have been on it more or less since op and never had the problems she is having.

radd profile image
radd in reply to Jeremy72

Jeremy,

Leading on from possible hormone reistance .......

I don't think your daughter has a pituitary adenoma because thyroid hormones wouldn't need replacement meds .... unless she has hormone resistance. This can be caused by a mutation on the thyroid hormone receptor (TR) beta gene but also other causes.

Also a continually elevated TSH can be caused by TRAbs (TSH antibodies) which is usually characteristic of Graves' disease but if your daughter were to have Thyroid Hormone Resistance, the thyroid hormone wouldn't respond to the elevated TSH so she would present as hypothyroid..

.

Thyroid Hormone Resistance

yourhormones.info/endocrine...

.

THS antibodies

thyroiduk.org.uk/tuk/about_... (TSIAb is the same as TSHAb)

Anthea55 profile image
Anthea55

Would it be worth her trying NDT? Many of us find that it suits us better.

The molecular structure of dessicated pigs thyroid is closer to human than synthetic thyroxine.

tolla36 profile image
tolla36

Don't listen to your gp. They have very little knowledge on this problem. Ask yo be referred to an endocrinologist ASAP.This is a massive fodose and will lead to more anxiety and serious panic attacks. Please do the above ASAP to get the correct blood testing and medication. Good luck

tolla36 profile image
tolla36

Don't listen to your gp. They have very little knowledge on this problem. Ask yo be referred to an endocrinologist ASAP.All the best friend

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