Help tsh levels still not right: Hi I was... - Thyroid UK

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Help tsh levels still not right

kalswut profile image
7 Replies

Hi I was diagnosed with hashimotos last year after a long time fighting for it. My gp put me in the lowest levothyroxine dose and insisted on my levels being normal at all my tests. I was not better at all and was having frequent (2weeks) heavy periods I'm 33 yrs old and have two children I was needed stupid amounts of sleep and wasn't functioning at all it put my partner under strain at work due to my being frequently ill. I decided to up my dose myself and found I felt considerably better I'm not symptom free I'm still struggling but ive been doing things slowly to see myself what suits me. I changed gp surgery and recently had a test done. The resukts suggest my dosage of levothyroxine is still on low a side,I think?? but I just want to check with others more experienced than myself. Bascially the current gp insists these results are normal too so I'm fairly disappointed and they haven't tested my t3 either which was very disappointing. Resukts are

Serum tsh level 5.13 mlu/L 0.30-4.50mlu/L

Serum free t4 level. 16.8 pool/L 10.00-22.00pmol/L

Because I'm still trying to understand it all I'm not sure what to make if these resukts confidently could anyone help me understand them please :)

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kalswut
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shaws profile image
shawsAdministrator

I am sorry you are having troubling symptoms. Probably you will have gathered by now that doctors are not always the best people regarding thyroid disease. As you have already been diagnosed with hashimotos (you have antibodies), this is part of an article by Dr Toft of the British Thyroid Association in an article in Pulse Online:-

2. I often see patients who have an elevated TSH but normal T4. How should I be managing them?

The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.

But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.

******

Further down the page is this quote in relation to dose:

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.

**

GP should immediately raise your dose by 25mcg take a blood test every six weeks with an increase until you feel well. Also ask for a vitamin B12, Vit D, iron, ferritin and folate to be done. If your GP should require a copy of the article he should be able to look it up in Pulse Online. If not we can provide a copy.

dgleds profile image
dgleds

Ok here is what I know...

Im in Canada ,and here what they consider normal reading for TSH is just below 1.0 to 4.8...I feel crummy way before 4.8...I wanna ly down do nothing...just not me. In the USA they say its more realistic to consider just below 1.0 to 3.0 as norms for TSH, and I agree with that...I had a doctor believing that too, but she has left...I will be starting at square one next visit....Im not real up on my t4 t3, and they never seem to check it much....I know one time I was considered to be over medicated TSH wise, yet my body according to my t4 or t3 was saying make more TSH (like a paradox)...they just waited the gp....they chased my thyroid around with different levels of levo (synthroid) I was going threw menopause...in the end they think I now have mild lupus..i have had hypothyroidism about 16 years aprox. I was getting them to check me often TSH, like standing order, but they are so reluctant to do much of anything...cutbacks I think...Hopefully I get a student doc...and I can convince her or him...

hellybaybee profile image
hellybaybee

Tsh still sounds high... uk considered it high if it is over 5.0... could be wrong but im sure that dropped to 3.0... either way its a bit of a joke when normal thyroids function successfully around the 1.0 mark but that's a whole other story... if you have hashimotos then your immune system is effectively attacking you thyroid... it is very possible and in fact probable that your body is not converting t4 into t3 successfully in which case looking at t4 and tsh is redundant anyway... if I were you I would get referred to a good endocrinologist who actually knows what theyre talking about... if you can afford to go private, there are lots of lovely supportive people on here who will give you reccomendations... good luck

Girlscout2 profile image
Girlscout2

Hey

Have you read John Midgley's new paper? TSH is a very variable thing and absolutely not the way to treat you: thyroiduk.org.uk/tuk/TUK_PD... I'd print that out and give it to your doctor.

Lots of patients find the way to treat hashis is to get on a dose of natural thyroid or levothyroxine that sufficiently combats symptoms: stopthethyroidmadness.com/h...

Rebecca

x

Heloise profile image
Heloise

Hi kals, I'm sorry but the same problem has been posted here by many, many people. This is the common practice of treatment in the UK. My tsh was 1.66 and I still didn't feel well. What has happened is that many have been forced to find other means of treating their symptoms or watch their own health deteriorate. There are not many choices. If you cannot find a reasonable GP or a good Endo, you can get your own testing through Blue Horizon. Some have even obtained hormone privately. This is ultimately a sad and unnecessary problem. stopthethyroidmadness.com/m...

stopthethyroidmadness.com/l...

MG1952 profile image
MG1952

Dear Kalswut,

I had a similar experience regarding menstrual problems soon after having been diagnosed with Hashimoto's. It was only after asking my GP for a referral to a gynaecologist that the matter was positively diagnosed and resolved by corrective key-hole surgery. Admittedly I was then in my mid-fifties and will never know whether my issues were entirely thyroid-related, menopausal or a combination of both. I suspect probably the latter.

It might be worthwhile going back to the GP, getting your iron level checked and asking for a referral to a gynaecologist. Remember, that if you would prefer to do so, you can always ask to see a female gynae. Whatever you choose to do, don't suffer unnecessarily and good luck.

With very best wishes.

MG1952

Jan49 profile image
Jan49

Have you looked at the Anthony Toft booklet about Thyroid in the BMA/Family Doctor series? It recommends a TSH of less than 1 for optimal dosage. I took a copy to my doctor years ago and because it was from a source he could not argue with I got my increase. Some chemists sell it, but it's less than £4 on Amazon. Good luck x

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