OMG!!!

[LMor]

Omg.......I’ve just received a letter from the hospital stating that I should come completely off my medication if my next blood test shows my tsh is still below range. What on Earth is wrong with so called professionals.....what am I supposed to do if my Gp agrees?

[Marz]

healthunlocked.com/thyroidu...

The more I read the more I cannot help thinking these Endos are confusing T4 with T3. Having been told in many cases not to prescribe T3 they are now stopping T4. Is it possible they are confused ? We read that it is happening more often than I ever remember in previous years. Is your Endo a Diabetes expert ? - possible he/she does not understand the Thyroid.

I linked your last post to help others comment.

You need to explain in writing that once on Medication for the Thyroid the TSH is of little value.

[LMor in reply to Marz]

I am going to ring the hospital now and ask for an email address so I can email her. I just don’t understand her request. Surely if I don’t take medication I will get extremely ill of even die. It’s really upset me that she even suggests it. Thank you Marz x

[Marz in reply to LMor]

I would ask in a new post - for the papers you need to show your Endo that you are not OVER medicated with a below range TSH.

[LMor in reply to Marz]

Ok thank you. I trying to write an email now

[fitmom50 in reply to LMor]

I would find another Dr. I did-left the Endocrine-and went to a GP, with paperwork and proof that I needed to be on it!! TSH is NO indication of need, USUALLY..... Do you have Celiac or other stomach ailments-mine prevents me from absorbing meds--Celiac!!!

[LMor in reply to fitmom50]

Hi. I am not celiac but I have awful stomach issues. Every day I have nausea or heartburn or urgency for the toilet. I can’t eat properly anymore and rarely get hungry. Although it’s a lot Better since going gluten free nearly a year ago.

[SeasideSusie Remembering]

I had this a few weeks ago from a nurse practitioner at my surgery, I had gone about another issue but he obviously thought it was OK to mention that my TSH was suppressed and maybe I shouldn't be on Levo.

I replied that I always have a suppressed TSH but he should be able to see that my November test showed FT4 and FT3 mid range and that I had been on Levo for over 40 years and if I didn't need it then I'm sure it would have been dealt with before. He replied that would be an interesting conversation to have with an endo so I said I'd been there, done that and got the T-shirt, saw a pig of an endo whose only aim was to get my TSH in range, and by doing so my free Ts plummeted to the bottom of range and I turned into a zombie who had to give up working on my own business and be looked after for 2 years. I told him there was absolutely no way I would be repeating that experience. He didn't continue the conversation.

My GP keeps going on about suppressed TSH too. They simply have no understanding at all.

[LMor in reply to SeasideSusie]

I am so worried now they will remove my medication......surely it’s life threatening?

[SeasideSusie Remembering in reply to LMor]

Yes, it can be life threatening.

If this decision has been based on these results:

Tsh 0.07. Range (0.3 - 4.5)

T4 21.1 Range (10-22)

then you should show them the Pulse article by Dr Toft

- 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)."

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

Also from that link

"According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above."

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Available on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

[Naomi8 in reply to SeasideSusie]

Unbelievable!Truly shocking!Thank goodness for this forum & self-medicating.

[Saggyuk]

Hi there

Yes seems silly - at least they should reduce to 25mcg and see from there about the remaining 25.

Just so that it doesn't stress you out too much, it's unlikely to be life threatening in your case as you're only on a low dose and started more recently so you likely still have enough thyroid function left to keep you going fine. Might make you feels pants though so if they are determined to do this, at least try and argue for just 25mcg reduction and retest in six weeks?

You've made a lot of changes in regards to gluten and nutrition in the last year so maybe having an impact so may need less meds possibly although couldn't say without full thyroid panel results. Your results indicate a possibility of over-medication but this can't be verified without T3 test and could just as easily be optimal dosing.

[Clutter]

LMor,

You won't die but you will become hypothyroid and it will take months to recover when you resume Levothyroxine. Just don't do it. TSH is mildly suppressed, it really isn't an issue. Insist on speaking to a consultant endocrinologist or the head of endocrinology for a second opinion. This doctor doesn't know what she's doing.

[LMor in reply to Clutter]

I have sent her an email explaining how I feel and that tsh is not an issue when you are on meds etc. I’ve asked her to retract her statement to my Gp as I feel coming off meds will only make my life a struggle. I will wait to see what she replies (if any)

Thank you clutter x

[trelemorele]

What was your TSH at 1st diagnosis?

How much were you prescribed?

Are you Hashi?

I wouldn't get into exchanging emails telling doctors how bad you feel without. They don't have and work on compassion so this won't work.

I would be firing complaint straight away and ask if they're ready to take responsibility for your decline in health, further side effects of lack of treatment I.e. early dementia, organs failure, other (look up online the rest)... and that you will be contacting solicitors to seek help on suing them personally and NHS for health damage and medical negligence.

All in writing, signed for.

[LMor in reply to trelemorele]

Hi. My tsh was 9.81 and yes I’m hashi. I’ve already sent the email. 😔 I’m sure I will get no response anyway.....or if I do, it will be a snotty one....lol. It’s just so frustrating. She recommended increasing my dose when my tsh was 1.4. What does she expect to happen if I increase. Maybe she thinks my tsh will raise? 😋

[trelemorele in reply to LMor]

Ok, so your lifelong treatment with Levo is fully and medically justified.

Just go into complaint and suing mode straight away. Exchanging pleads won't work. Don't forget who you're dealing with - bunch of uneducated ignorants.

Good luck, report back.

[LMor in reply to trelemorele]

Thank you

[silverfox7]

I would insist on getting your FT3 done as that is the most important reading but many don't seem to be aware of this. Your FT3 can be high but your FT3 could be on the floor so deducting T4 would be dangerous. So you could have a conversion problem which is common and it can be improved greatly but making sure Vit D, B12, folate and ferritin are optimal, not just in range so please get those tested and let us know your readings and if low ehstcyour doctor is doing about it. We can't expect our thyroid to work well if the things that help it to do that aren't in place. It can take time to address if that's the problem. It took me 5 months but it solved my conversation issue but obviously the time is dependent on how low things are.