I have been taking 75mcg of levothyroxine for about 6 months, but I'm still feeling quite ill, and steadily gaining weight.
I eat very healthily ( I know......I really do !!). And I try to exercise 3 times a week, but it does floor me for the rest of the day, when I do.
I've tried to discuss T3 conversion with my doctor and he says its not relevant looking at my results
He also said that because I am 50 and going through the menopause, I should expect to gain weight. Although he had no answer when I said 4 stone was surely excessive.
My latest bloods are as follows:
TSH 1.8 (0.35 - 5.0miu/L)
T4 11.4 (9.0 - 19.0pmol/L)
T3 3.3 (2.90 - 6.1pmol/L)
B12 serum 355 (187.0 - 883.0ng/L)
Vitamin D 65 (75 - 200nmol/L)
Red blood cell 11.3% (11.6 - 14.8%)
GFR calculated abbreviated MDRD 84mL/min/1.73m2 (>90.0mL/min/1.73m2
The NHS endocrinologist, agrees with my doctor
I'm getting really down about looking & feeling the way I do. And it seems the NHS are unable or unwilling to help.
Any suggestions of how and where I can get any help would be greatly appreciated.
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laurellasj
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Your under medicated, TSH should be around one and FT4 towards top of range and FT3 at least half way in range
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.
Unexplained weight gain is the commonest query on the forum. It is due to us being hypothyroid, which means our metabolism slows right down so weight is gained. Some doctors are cruel and suggest it is due to overeating but that's because they don't know any clinical symptoms.
As our dose is gradually increased until we are on an optimum dose, weight should reduce or enable you to diet. Trying to diet or exercise too much will not give us the result we want. We have to be on optimum dose.
Did your doctor let you know what he intends to do with the vitamin D result which is below range? Or is he going to ignore that as well. You need to have a vit D towards the top of the range, so go back and ask for supplements. Low vitamin D can cause all sorts of unpleasant symptoms.
Also, ask him what he plans to do about your red blood cell percentage being below range, indicating anaemia? He should run folate and ferritin tests to check this.
I wouldn't exercise to the point of exhaustion as you haven't got enough of the active T3 in your system and will end up feeling worse. Do some gentle exercise until you feel better.
Putting on four stone is obviously nothing to do with the menopause and weight gain is not inevitable. Your doctor sounds very lazy.
He didn't mention Vitamin D or red blood cell count.
It seems that the menopause is an easy excuse, as even the endocrinologist stated in her letter that she agrees with the doctor that my test results show my medication is fine, and the other symptoms are related to the menopause
Doctors are very 'happy' when results are 'somewhere' in range.
Patients aren't so happy as they still have disabling clinical symptoms. Both doctors are very unknowledgeable about clinical symptoms as they only look at a blood test result and not the patient.
Your recent ones:
TSH 1.8 (0.35 - 5.0miu/L) TSH could be 1 or lower.
T4 11.4 (9.0 - 19.0pmol/L) T4 should be nearer the top rather than two points above bottom range.
T3 3.3 (2.90 - 6.1pmol/L) T3 - you would feel better if it was towards the upper range instead of near bottom.
B12 serum 355 (187.0 - 883.0ng/L) B12 is too low and new recommendations are that it should be nearer 1,000.
Vitamin D 65 (75 - 200nmol/L) - Vit D too low and has to be rectified to be nearer the top.
Red blood cell 11.3% (11.6 - 14.8%) - I don't know much about this but it is bottom.
GFR calculated abbreviated MDRD 84mL/min/1.73m2 (>90.0mL/min/1.73m2
Many members have recovered by Doing It Themselves.
I thought the purpose was to relieve all clinical symptoms but 'modern-day doctors look no further the blood results and are happy when they are somewhere in range. They know no clinical symptoms at all.
It is so frustrating. it seems the more I state the facts to the doctor, the more he digs his heels in. Surely there is somewhere I can go that understands the whole picture !
who has a list of Endocrinologists. You can put up a post if you decide on one and ask for a Private Message to be sent from any member who has consulted with him/her. The post will be closed just in case a name is inadvertently posted on the forum and Private Messages will be sent to you alone.
You also need to know if you have Hashimoto's also called autoimmune thyroid disease, diagnosed by high thyroid antibodies. If not been tested ask that they are.
Also there's no folate result or ferritin
Hashimoto's affects the gut and leads to low vitamin levels
Low vitamin levels stop Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
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