What do you think of my Endo's comments!! - Thyroid UK

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What do you think of my Endo's comments!!

cherylwadey
cherylwadey

Hi All

Well I saw the endocrinologist last week (privately - self funding) and he said my results are all fine. (Serum TSH 0.29 range 0.30-3.94, Serum Free T4 13.6 range 12.30-20.20, Serum Free T3 3.7 range 3.70-6.70). I asked him why my surgery had asked to see me following these results and he said they would have wanted to lower my Levo. He said he would write to them to advise that they keep my dose the same. He said a Gluten Free diet is totally unnecessary and usually can lead to diabetes. He told me the fact I am not sleeping is not due to my underactive thyroid and has prescribed amitriptyline which I might add is brilliant. He was pleased that my Ferritin is now at 73 and told me to continue with the liquid iron. I said my hair loss is no better though and he said I wouldn't notice a difference for at least another 5 or 6 months. I asked about my weight gain and he said it is due to my age (50) and that I need to go on a totally carb free diet. I told him I came off the HRT for 3 reasons, 1. I only went on it to improve my hair loss and it made not difference. 2. I cannot stand the Progesterone tablets or combined patches as Progesterone bloats me beyond ridiculous and turns me into a crazy angry woman. 3. I was told that HRT just supresses the symptoms of menopause and when I am made to come off it the symptoms will just return but worse. He said that is rubblish and I should stay on the HRT and that there are other methods which could suit me more and has asked my GP to refer me to one of the Gynaes at Shirley Oaks. I'm currently taking 100mg of Levo. Will my hair loss eventually stop? I have been on a carb free diet for 9 days and my weight is exactly the same. I feel a little disillusioned.

30 Replies
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healthunlocked.com/thyroidu...

The above link takes you to your last post and the many replies ! I think you were asked to post your Vitamin and Mineral results with ranges - :-) Did you manage to sign up for your historical results as suggested by Nanaedake previously.

9 days is not long enough to be on a diet and see results - stick with it and you maybe surprised !

Did you discuss Central Hypothyroidism with the Endo as suggested before ? I would suggest having your anti-bodies tested again - as I believe they were fine before ?? Have you found the results for them ?

cherylwadey
cherylwadey
in reply to Marz

Hi Marz, I don't have any results as the Endo kept them. When you say sign up for my results, does this mean I can do it online?

I must have missed a comment regarding Central Hypothyroidism, what is this?

Marz
Marz
in reply to cherylwadey

If you read the link I posted for you above - it takes you to your previous post and replies. It was explained there that you should be able to sign up for your results at the GP surgery - so you can view them on-line. They will also have your hospital results. Same thing with Central/Secondary Hypo - all in the link I posted in my first response above.

shaws
shawsAdministrator

You are on an insufficient does when FT4 and FT3 are bottom of the range. Why couldn't he prescribe T3 instead of amitriptyline when your FT3 is bottom of range as is FT4 when both should be towards the upper part? You need more thyroid hormones.

restartmed.com/t3-thyroid-h...

healthunlocked.com/thyroidu...

cherylwadey
cherylwadey
in reply to shaws

When I asked him about T3 he got quite irritated and said you don't need that and stop reading things on the internet as they are usually unqualified people making the comments. I beg to differ.

shaws
shawsAdministrator
in reply to cherylwadey

Yes - he is right that we are unqualified but a sufferer knows when he/she is on the right dose with the right hormone replacements. Thanks to all of the advice and experience of those who have recovered and relieved their clinical symptoms of which many 'professional' people have no idea of one symptom, never mind easing all of them.

Is he aware that levothyroxine is T4 only? Also that it is an inactive hormone? It should convert to T3. T3 being the only Active thyroid hormone and it is needed in our millions - if not billions of T3 receptor cells. Once there its work begins.

hormonerestoration.com/

hormonerestoration.com/Docs...

I think you're wasting your money with that endo, if he thinks your Frees are fine! You're FT3 is right at the bottom of the range. No wonder you're still losing your hair and can't lose weight. The man knows nothing about thyroid.

And a carb-free diet is exactly the wrong thing to do because it will negatively impact your conversion, making your FT3 lower, and therefore you will be more hypo and put on more weight.

Despite your low-ish TSH, you need an increase in dose - and a new endo!

My thoughts exactly greygoose. I might look into another Endo and seek a second opinion.

Sounds like a good idea. :)

shaws
shawsAdministrator
in reply to cherylwadey

email Dionne at Thyroiduk.org.uk who has a list of Endocrinologists at:-

tukadmin@thyroiduk.org

cherylwadey
cherylwadey
in reply to shaws

Oh superb. Thank you Shaws.

shaws
shawsAdministrator
in reply to cherylwadey

It seems like looking for a needle in a haystack for a doctor who really know how to treat dysfunctions of the thyroid gland. This is a disgrace as many do not recover on levothyroxe but are told this is all that is prescribed and bloods are 'normal'.

This is info from another ideal doctor.

hormonerestoration.com/PCon...

hormonerestoration.com/Thyr...

cherylwadey
cherylwadey
in reply to shaws

Hi Shaws, I emailed Dionne 4 or 5 days ago at the email address you gave me above but I haven't had a response. Does it usually take a long time to receive a reply?

shaws
shawsAdministrator
in reply to cherylwadey

That's unusual. Try the link on the following page:-

thyroiduk.org/tuk/About_Us/...

TSH 0.29 range 0.30-3.94, Serum Free T4 13.6 range 12.30-20.20, Serum Free T3 3.7 range 3.70-6.70

I see so many similar results on these forums. Clearly your TSH is too low for these low normal fT3, fT4. Since the TSH is not adequately responding there's no value in using it as a marker for dose titration. You need more hormone. initially they should increase your levothyroxine, perhaps to 150 mcg at first. I strongly suspect you will need some liothyronine to bring up your fT3 but it makes sense to give more levothyroxine a trial first. You really do need more thyroid hormone, it may help with your hair, it may not.

(Central hypothyroidism is when the pituitary fails to produce sufficient TSH. This can happen when there are pituitary problems and other pituitary hormones are also affected. I suspect you do not have a damaged pituitary, just the pituitary failing to produce sufficient thyroid hormone, not full on central hypothyroidism).

Carb-free diet is over doing it a bit, certainly reduce carbs as we tend to have to much, it won't affect your thyroid either way but a low carb diet may help reduce weight.

Very odd endo... gluten free turns you into a diabetic but totally carb free is to loose weight! Plus you appear to be very undermedicated if you want a healthy active FT3 needs to be more like 5-6. I was given amitriptyline for fibromyalgia ...beware your prescription do not create the same dead- end diagnosis!

Hi Judith, which prescription are you referring to, the Levo or the Amitiptyline?

Amitriptyline is the fibromyalgia drug, and the diagnosis itself is dead-end. However I am turning the tables ( following Dr Lowe's work) and working to theory fibromyalgia is infact largely poorly treated hypothyroid- so now take no T3 as well as levothyroxin.

shaws
shawsAdministrator
in reply to Judithdalston

What do you mean you now take no T3 as well as levothyroxine?

These are two excerpts and Dr Lowe only prescribed NDT for patients or T3 for thyroid hormone resistant patients:

Dr. Lowe: Keep in mind that many patients' fibromyalgia symptoms are actually the symptoms of untreated or undertreated hypothyroidism. Your fibromyalgia may actually be hypothyroidism your doctor has failed to diagnose and properly treat. This is certainly possible because neck trauma often induces partial thyroid gland failure.

2. Dr. Lowe: First, your fibromyalgia symptoms are most likely nothing more than hypothyroid symptoms. This is indicated by the improvement in your fibromyalgia symptoms with the increased dosage of thyroid hormone. We find that fibromyalgia symptoms completely disappear when most hypothyroid patients take dosages of thyroid hormone that suppress the TSH level. Dosages that suppress the TSH level are larger than the "replacement" dosages mandated by conventional endocrinologists.

web.archive.org/web/2010103...

Judithdalston
Judithdalston
in reply to shaws

Sorry typo..iPad being super sensitive... should read 'now take T3 as well as levothyroxin '; won't edit top reply as then your comment won't make sense! Thanks for adding that link to Dr Lowe's Fibromyalgia trust - had not read it for ages, have used his Q&A pages linking fibromyalgia to hypothyroidism more frquently/ often to refer to. Incidentally had looked to buy a copy of his 'The Metabolic Treatment of Fibromyalgia' but can't afford £400 or so for second hand book; even borrowing from British Library was c.£40!

shaws
shawsAdministrator
in reply to Judithdalston

My goodness his book in the British Library - that's great - but £40 to borrow will definitely be difficult for some.

Amitriptyline is also prescribed for depression however the dose for that is far higher, they start with at least 150mg a day. I take 20mg and I have to say I do sleep ok ish. I believe it is also prescribed for rheumatism.

I hope your Endo gave you hard proof of gluten free diets causing diabetes. On this forum we do not recommend buying factory produced gluten free but rather eating fresh veg. Fruit, meat and dairy, unless intolerant, gluten free grains if desired and cooking from scratch to optimise nutrition. How that causes diabetes I'd like to know! Your Endo needs to substantiate his claim rather than making throw away comments. If you go carb free you will be practically going gluten free unless you buy lots of packaged sauces.

He said gluten free can lead to diabetes. That's all.

Well some people need to be gluten free and they don't automatically get diabetes. Other factors like genetics, weight gain and poor diet, no exercise more likely to cause diabetes. I've been on low carb diet for a year and no weight loss at all. Low carb helps to maintain steadier blood glucose levels I believe and my GP thinks it's a good plan.

I really do have to say what a load of rubbish on that comment! I avoid grain based carbs so as not to spike my blood glucose but I eat lots of carbs - they just come from other sources - vegetables that grow above ground. You can’t not eat carbs - just be selective about the carbs yOu choose. Google for Low Carb, High Fat diets, there is a load of information out there and if you are going gluten free - I reduced my thyroid antibodies dramatically by going gluten free. No sign of being diabetic, in fact I have gone from being prediabetic when I used to eat gluten t being in the normal non diabetic range since I gave it up. Mainly because I no longer stuff myself with grain based carbs and loads of root vegetables.

SlowDragon
SlowDragonAdministrator

Your endocrinologist is probably a Diabetes specialist.

Your results clearly show low FT3 and low FT4

Essential to test vitamin D, folate, ferritin and B12, privately if necessary

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)

Your low FT3 is likely cause of insomnia.....or low vitamin D

Low vitamin D and low B vitamins are linked

drgominak.com/sleep/vitamin...

Many people find increased FT3 level improves sleep.

Do you take your Levothyroxine at bedtime? That can help too

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

verywell.com/should-i-take-...

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. Watch out for brand change when dose is increased

Thank you kindly. Much appreciated Slow Dragon.

SlowDragon
SlowDragonAdministrator
in reply to cherylwadey

And the bit about gluten free diet and diabetes is rubbish

Commercial gluten free foods are too sweet (and too expensive)

But gluten free diet itself is not an issue

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