Thyroid disease for over 43 years

[nicola43]

Had a sub total thyroidectomy in 1978 after 3 years of trying to get the levels normal. Was left and never followed up. I assumed I had been "cured". Sixteen years later they discovered I had gone hyperthyroid again and had radioactive iodine treatment. I am on 75mcg Levothyroxine and suffering with migraines and a brain that just cannot always function. My hair has gone very thin and I have lost a lot of eyelashes. My skin is dry and I now have drops for my eyes as they are also dry. I managed to get a blood test for T3 and T4. Results are TSH 2.13, T3 2.30 and T4 13.9. I think I should be on more Levothyroxine. Just wonder if there is any advice. Thank you

[SeasideSusie Remembering]

Nicola

Your TSH is certainly too high for a treated hypo patient. It's generally said that most feel best when TSH is 1 or below with FT4 and FT3 in the upper part of their reference ranges.

However, it's not possible to comment on your FT4 and FT3 as you haven't given the ranges. They vary from lab to lab, eg my lab is 7-17, we also see here 9-19, 12-22, etc. So if you can please add the ranges that your lab has given (maybe in brackets or at the side on your print out) then we can comment. I would take a guess that your FT3 is low in range (if that is FT3 you've given rather than Total T3).

[nicola43 in reply to SeasideSusie]

Hi Susie Free T4 13.9 (9.00 - 19.0). Free T3 2.30 (2.89 - 4.88) TSH 2.13 mU/L (0.40 - 5.00)

[diogenes Remembering]

Just to compare. My wife has been on 150 (occasionally 125) thyroxine for nearly 50 years. She has been well on this throughout fortunately. But to give an idea of her usual results, these are around TSH undetectable to 0.02, FT4 around 19-22. T3 unknown as never done. This suggests you need at least 125 to get something like normal as your results are all poor.

[nicola43 in reply to diogenes]

Many thanks for your reply Diogenes. I will certainly note down your wife's results and check against my own for future reference.

[nicola43]

free T4 13.9 (9.00 - 19.0). Free T3 2.30 (2.89 - 4.88) TSH 2.13 mU/L (0.40 - 5.00)

[SeasideSusie Remembering in reply to nicola43]

Nicola

free T4 13.9 (9.00 - 19.0) - this is 49% through range

Free T3 2.30 (2.89 - 4.88) - below range

You are definitely undermedicated.

So your FT4 is too low, it should be around 75% when on Levo (if that is where you feel well) so that would be 16.5+

Your below range FT3 shows that conversion is extremely poor, but that could be because you're not on enough Levo to bring your TSH down to 1 and your FT4 up to the upper part of the reference range.

You need an increase in Levo of 25mcg now, retest in 6 weeks, another increase of 25mcg, repeat until levels are where they need to be for you to feel well. To support your request for an increase in dose, use the following information from thyroiduk.org/tuk/about_the... > Treatment Options

Dr Toft 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)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist.

You can obtain a copy of the article by emailing Dionne at [e-mail] print it and highlight question 6 to show your doctor.

Also, you may have poor nutrient levels, if levels are low or there are any deficiencies then thyroid hormone can't work properly so you need to test (privately or through your GP)

Vit D

B12

Folate

Ferritin

Taking selenium l-selenomethionine 200mcg daily helps conversion.

[nicola43 in reply to SeasideSusie]

Thank you so much for this information. I will email Dionne. I am osteoporotic as I was left without testing after having subtotal in 1978. I take Fultium D3 800. equivalent to 20mcg of Vitamin D. I also have Calcuim supplements. I have a raised Serum creatinine at 111 umol/L (53 - 97) and a Serum urea level 7.2 mmol/L (2.5 - 6.7). I find that GP's are not always sympathetic to thyroid problems.

[SeasideSusie Remembering in reply to nicola43]

Nicola

20mcg D3 is only 800iu and that is barely a maintenance dose for someone with a good level already. You really need to know your levels of all those nutrients listed.

Do you take K2-MK7 with your D3? D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems. As you are also taking calcium I would say K2-MK7 is a must. Have you had calcium tested recently?

Do you take magnesium? That helps the body use D3 and is an important cofactor, along with K2-MK7. What about Boron? I believe that helps boost bone density.

[nicola43 in reply to SeasideSusie]

I do not take K2-MK7, nor magnesium, nor Boron. I have an appointment to see my GP and will be asking for more bloods. Thank you very much for all the information. Thank goodness I asked a question.

[SeasideSusie Remembering in reply to nicola43]

Nicola

Here is the Vit D Council's list of important cofactors when taking D3

vitamindcouncil.org/about-v...

I don't know too much about bone health and what's best to take for osteoporosis, etc, but from what I've read on here it's not all about calcium. I can't remember whether it's greygoose or Marz who may have more information.

Your GP may not about D3's important cofactors and they're not something you'll get on prescription.

[greygoose in reply to SeasideSusie]

It's Marz that has the information, but I totally agree with her! Prescribing calcium supplements is a doctor's knee-jerk reaction. But, doctors know nothing about nutrition, and calcium supplements are not a good thing to take.

[SeasideSusie Remembering in reply to greygoose]

Thanks GG, I wasn't quite sure who it was.

[Marz in reply to nicola43]

drmyhill.co.uk/wiki/Osteopo...

The above link takes you to the website of Dr Sarah Myhill. She is unable to take on more patients and so has created this amazing website so you can follow her advice. So much to read and learn and Calcium is involved in the breaking down of old bone cells - called osteoclasts. Osteoblasts are the ones that build new bone. VitK2-MK7 directs calcium away from the arteries into bones and teeth.

I do not think your GP will test for K2 and Magnesium - anyway most of your magnesium resides in the cells and NOT in the blood. Most of us are low in Magnesium. Taking a GOOD dose of VitD aids the uptake of calcium from foods naturally so extra calcium is rarely needed.

BOOKS : the Magnesium Miracle .... AND - The Calcium Paradox.

Am afraid we have to read and learn for ourselves

[SeasideSusie Remembering in reply to Marz]

Thanks Marz. I was a patient of Dr M many moons ago, I really must try and remember about her website.

[Anniewoz1]

Hi Nicola43

I’ve “clicked” to follow you as your post could’ve been written by me !

Partial thyroidectomy, also in 1978

Ive only recently started levothyroxine, so only on a starter dose at the moment.

I’ve had great advice here, from very knowledgeable folk,

[nicola43 in reply to Anniewoz1]

Thank you Anniewoz1. I hope you are okay on your dose and continue to be so. Can't believe how much progress there has been since 1978.

[jimh111]

Nicola,

Free T4 13.9 (9.00 - 19.0). Free T3 2.30 (2.89 - 4.88) TSH 2.13 mU/L (0.40 - 5.00)

You are certainly undermedicated, your free T3 is much too low and explains your symptoms. I would get your levothyroxine dose increased until your fT4 is around 18. If you do not recover then you will need to have some liothyronine (L-T3) prescribed. This is difficult to get but you will probably need it. See how you do on a higher dose of levothyroxine.

I've noticed that patients who have a period of hyperthyroidism sometimes end up with a TSH that is abnormally low for their low fT3, fT4 levels. In these cases you can't rely on TSH telling you anything. These patients also tend to have low fT3 levels and need liothyronine.

See how you do on more levothyroxine but be prepared to fight for liothyronine if the levothyroxine doesn't work.

[SlowDragon Administrator]

You are under medicated and need dose of Levothyroxine increase in 25mcg steps. Retesting 6-8 weeks after each dose increase, until TSH is under one, FT4 towards top of range and FT3 at least half way in range

Getting vitamins optimal is also ESSENTIAL

ask GP to test vitamin D, folate, ferritin and B12

As others have said your vitamin D dose is likely too little. Levels need to be optimal, not just about in range - for vitamin D that's around 100nmol

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus very important to test vitamin D, folate, ferritin and B12

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If FT3 remains low after these steps then, like many you may need the addition of small dose of T3

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 print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Plus request the list of recommended thyroid specialists, some are T3 friendly

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy

rcpe.ac.uk/sites/default/fi...

[nicola43 in reply to SlowDragon]

Much appreciation for your comments. I will certainly be asking my GP for more blood tests and will go private for the tests if I cannot get the GP to let me have them done. Thank goodness I asked a question on the site.