Still struggling!

[dylansmum]

I have just read a long list of underactive thyroid symptoms.

Weight gain, feeling cold, dry skin and hair,

Depressed, poor memory and more.

I have been taking up to 200mcg Levothyroxine for almost 10 years, and...... still have everyone of those symptoms!

Anyone else got the same problems.

[BadHare]

Maybe take a look at some of the posts & responses re nutrition & supplements to see if you're missing something important, or need to cut something out of your diet, that will help your meds work better.

[SeasideSusie Remembering]

dylansmum

When we remain symptomatic and on a highish dose of Levo, obviously it's not doing it's job. There can be a couple of reasons for that - you're not absorbing the Levo properly or you're not converting T4 to T3 - T4 being a storage hormone which has to convert to T3 which is the active hormone, and it's low T3 that causes symptoms. What you need is current results for the following before we can help you:

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

If you can post them, with their reference ranges and units of measurement for Vit D and B12, then we can comment further.

If they haven't already been done then you can ask your GP but he probably can't get FT3 and thyroid antibodies done.

Or you can do a private test with one of our recommended labs which includes everything mentioned. Hundreds of us here do these private tests when we can't get them done with our GP. Best value at the moment, if ordered before midnight on Monday, 29th April is Medichecks Thyroid Check UTRAVIT which can be done by fingerprick or venous blood draw if preferred at extra cost:

medichecks.com/thyroid-func...

Blue Horizon Thyroid Check PLUS ELEVEN also does this test:

bluehorizonmedicals.co.uk/t...

[dylansmum in reply to SeasideSusie]

Hi Seaside Susie

The only blood test at my surgery is just TSH. It was quite high 8 or close, the attached graph showed lines shooting up, then diving right back down again! I got a call from the surgery to up levo by 25mg. I am now on 150mg, although over the years have taken 200mg. Every time I have a blood test (once per year) they always alter my dosage of Levo. In the ten years I have been on it, I can honestly say, my symptoms remain, and new ones start up! I ache all over now, and think I have carpel tunnel. I am a very active person, always working or out! I don't let it get the better of me, however I think I have mentioned before, why do I bother taking Levothyroxine, I think it is making it worse!

[SeasideSusie Remembering in reply to dylansmum]

Dylansmum

The only blood test at my surgery is just TSH

Then I think you should do a private test, like so many of us have to, that will tell you everything you need to know.

It was quite high 8 or close, the attached graph showed lines shooting up, then diving right back down again!

If your TSH is 8 then it's over range. The range should also be with the result, usually something like 0.2-4.2.

If your TSH is fluctuating quite wildly, eg. low in range - high in range/over range - back to low in range, there are a couple of reasons that may cause this:

1) You have autoimmune thyroid disease, aka Hashimoto's, which is confirmed by antibody test coming back positive.

5 years ago you made a post with the title "Has anyone with Hashimotos managed to lose any significant weight? If so what's the secret/answer? Getting desperate x" So do you actually know if you have Hashi's? If you do have have Hashi's then that explains why your TSH fluctuates.

2) You are not having your test done under the same conditions each time. Always advised here:

When booking thyroid tests, we advise:

* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

In the ten years I have been on it, I can honestly say, my symptoms remain, and new ones start up!

If you are symptomatic then you are undermedicated. Testing TSH alone is not a good indicator of thyroid status. TSH is a pituitary hormone. The pituitary checks to see if the thyroid is producing enough thyroid hormone (T4) or, in the case of hypothyroid patients, to see if we are taking enough Levo (T4). If it detects there is not enough T4 then it sends a signal to the thyroid - TSH (Thyroid Stimulating Hormone) to produce some, when that signal is sent the TSH will be high. If it detects there is enough T4 then TSH remains low. So with your TSH being 8 it's saying there is not enough T4.

To know how much thyroid hormone you are producing, or if the synthetic thyroid hormone you are taking, is enough, we need to measure FT4.

FT4 is a prohormone, a storage hormone, it is inactive. It has to be converted to T3, the active hormone that every cell in our body needs. Low T3 causes symptoms. So to know if we are converting T4 to T3 well enough we have to measure FT3 at the same time as FT4.

When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

Further evidence of this is in a paper written by Dr Toft, past president of the British Thyroid Association and leading endocrinologist who states in Pulse magazine (the magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

[e-mail]

and you can print it and highlight question 6 to show your doctor when asking for an increase in Levo and to show how important it is to test FT4 and FT3.

NHS Leeds teaching hospital (so appropriate for all NHS hospitals and doctors) say this:

pathology.leedsth.nhs.uk/pa...

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .......... This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L .......... Likely under Replacement

Member Diogenes (Dr John Midgely, scientist, thyroid researcher and advisor to Thyroid UK) recently stated in a post

TSH is no good, except if you are not taking the pills. FT4 is no good because you can often have an over-the-top value in good health on therapy. The only reliable test is FT3

So, lots of evidence there for you to discuss your over range TSH with your GP and request an increase in your Levo.

Always ask for a print out of your test results, we are legally entitled to our results here in the UK. Just as at reception - a doctor will question why you want them - but make sure it's a print out not verbal or hand written, and ensure the reference ranges are included. Alternatively, take the information from online as you appear to have access to your results. Put them on a spreadsheet like this

Date - Test Name - Result - Reference Range - Dose of Levo at the time - Notes on how you feel

Then you have something to refer back to, you will know how you felt on what dose and what result was. You can then say "I felt better when I was taking xxx amount of Levo when my TSH was XX and my FT4 was YY and FT3 was ZZ."

I don't let it get the better of me, however I think I have mentioned before, why do I bother taking Levothyroxine, I think it is making it worse!

Many doctors are poorly trained in treating hypothyroidism and believe that the TSH is all that is needed. Yours is even failing you by just looking at the TSH and not even wondering why it rises and falls. We have to be our own advocate if we want to feel well.

A few months ago you wrote this post

healthunlocked.com/thyroidu...

The replies you had asked you questions and suggested private testing then, yet you didn't reply to any of your responses. In fact, going back 3 years it was suggested you do private testing, and again you didn't reply to any responses you had.

So why not do the private test? Include the vitamins and minerals as mentioned - these are very important and if you do have Hashi's it's essential that you test them because Hashi's tends to cause low nutrient levels and deficiencies. I think you are going to find your answer with with the ULTRAVIT or the PLUS ELEVEN test. Post results and ranges when you have them for further comment.

[SlowDragon Administrator]

Your previous post had TSH result of 8 - so you were under medicated and needed dose increase

Did that happen, have you had FULL Thyroid and vitamin testing since dose increase?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or if under medicated and TSH over range

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[dylansmum]

Thank you all. I will invest in a private blood test x

[Hidden]

whitelotusclinic.ca/zinc-se...

in a blog by (Dr Fiona Mc Culloch MD} it explains how T3 production is increased by selenium (se) . zinc, and vitamin C. If there is a deficiency in these in combination, then T3 production might be reduced. The balance of selenium and zinc must be within normal levels, but not too high or they can be toxic. May be you could try a supplement of these at the recommended daily dose. it can be found in many foods, but if your T4 is not converting to T3 then may be supplementation might help thyroid function.

Supplementation might help before having private tests. Having a test and finding a deficiency won't tell you how much to take. If you have adrenal fatigue, with hypothyroid then high doses of vitamin C of at least 1000mg a day. Some dispersible flavoured tablets contain selenium and zinc and high vitamin C. Redoxon and others from Boot's may combine these minerals and vitamin C. I find it useful to break the tablet up into quarters and dissolve some in water to take four times a day. As vitamin C is flushed out of the system in a few hours taking it throughout the day might help absorption. Have certainly improved since taking these mixed supplements.