Help is there any hope : Hello I have been on... - Thyroid UK

Thyroid UK

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Help is there any hope

Metalhead45
Metalhead45

Hello

I have been on meds for 6mths retest after 3 mth and up to 50 from 25 retested at 6mths and told tsh is now normal range 4.6 but I feel worse when when started ,as I had week I felt normal about 5weeks after starting so now know how bad I had gotten . Have been told normal so that’s it come back in year for next test . I sat in my car and just cried after as can’t go on like this have depression ,brain fog ,joint pain .fatigue anxiety and legs cramps . Feel let down told doc about all and got told exercise come back in year . Thinking of trying differant doctor any one else had same looking for hope or is this how it will be now

15 Replies

Get a different doctor. A TSH of 4.6 is very far from normal. It should be much lower than that. You are obviously under-medicated and your doctor is a sadist.

Read this thread on TSH distribution in apparently healthy people with no known thyroid disease :

healthunlocked.com/thyroidu...

SeasideSusie
SeasideSusieAdministrator

Metalhead45

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.

Show your GP:

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

Scroll down to: "Thyroxine Replacement Therapy in Primary Hypothyroidism" and in the box you will see:

TSH Level.... This Indicates

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

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

Also see:

thyroiduk.org.uk/tuk/about_...

Scroll down to "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 on Monday at ThyroidUK

tukadmin@thyroiduk.org

Print it to show your GP and ask for an increase in your dose of Levo.

Thats horrible start doing your own research! Did they test for any vitamins? I know for me my vitamin d was super low and needed to take a supplement I went through a lot of doctors here in Ohio and still looking for one that treats me as a human not just a number ! It sounds like you tsh is high. My last last showed my tsh at 4.7 and my crappy doctor is upping my dose from 25 during the week to 50 on weekend

SlowDragon
SlowDragonAdministrator

On Levothyroxine TSH should be around one. You need 25mcg dose increase in Levothyroxine

See a different GP

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Crying won't help, the only thing that has helped me when I was desperate was joining this site and taking the expert advice I was given to the letter. Before having my thyroid removed in Oct 2015 I had never been on any medication and knew nothing at all regarding the thyroid. After 6/7 months on Levo and feeling like you do now I joined this site. I began with a private Blue Horizon Blood test which I posted on here with the ranges.

I was then given information and bought my own NDT. I am 72 years old and feel happy and well now and never visit any doctors or Endos. I do yoga and walk my dogs everyday.

You can feel well too with the help on here, good luck !

Hidden
Hidden

Poor you! I went through exactly the same, though my TSH was down to 2.99 I still didn't feel well and had obvious hypothyroid symptoms. It was finally resolved only a couple of days ago. Here is my thread on it:

healthunlocked.com/thyroidu...

Quotes from the first two posts:

"I realised this morning that the best approach on seeing the nurse about it was, instead of arguing and bringing "Proof" of the need of an increase… I needed to be "Humble" and plead for help instead of looking for a fight. So I listed the symptoms I still get and how they affect my quality of life.

Here are some of the points I made, If someone has similar problems in not getting enough medication they are welcome to use it as a "Template":

• I still have hypothyroid symptoms

• They affect my quality of life quite a lot

• It seems that TSH and T4, though now within range, are not yet optimal for me

Then I listed the main/most troubling symptoms. Divided them into "Constant or frequent" and "Occasional".

Then listed how they affect my life: difficulty concentrating and getting anything done, tiredness, , slowness, lack of motivation, short term memory lapses, afraid of having to give up driving, lots of errors when typing...

It may not work, but it is non-threatening to the medic's ego and should make them at least willing to take you seriously. "

You probably still need a sympathetic doctor or nurse. That was the other miracle for me (besides realising the above was the best approach) I was seen by a different nurse who was willing to listen, which the previous one didn't seem to be (she was nice enough but very much "I'm the nurse and I know what you need" type).

I do hope that this gets sorted very soon xxx

4.6 is not normal it is far too high. It needs to be between 0.25 and 0.5. Thyroid UK have response from Toft a highly regarded endocrinologist stating this. Get a copy and force your GP to read it in front of you and to increase your dose until that TSH is achieved. If they refuse see someone else at the practice for a second opinion. You will never feel well with a TSH of that magnitude

Hidden
Hidden in reply to TSH110

My highest TSH measurement was just under 6, and T4 still in range (though lowish) and I did NOT feel very bright! The next test showed TSH under 5 and T4 just a bit higher than before, and I was still nowhere near well. Now TSH 2.99 and T4 crept up to over 15, but it's STILL not enough.

It seems that the levels at which we feel well are very individual, but I would be very surprised if someone felt fine with a TSH above 4.

TSH110
TSH110 in reply to Hidden

There may be the very rare person that does feel ok with it that high but in all countries bar the uk hypothyroidism would be an automatic diagnosis and replacement hormone therapy would be started. Exceptions probe the rule but to use exceptions as the rule is patently absurd as for claiming a TSH up to 10 is normal it is a pity those declaring this cannot be made to suffer it for six months or better still a year and then see if they have the nerve to claim it is acceptable to let anyone suffer with it or make out it is within a normal range. They’d be begging for treatment as their lives collapsed around them, in my opinion.

Hidden
Hidden in reply to TSH110

The top of the official range in my tests stopped at 4.2! But it seems they still don't understand that's too high

TSH110
TSH110 in reply to Hidden

That’s just a range taken from the labs samples some whose results were used to derive the range may have been from people with hypothyroidism. The mean is a much more meaningful value, which is usually around 1.8 but If you are hypothyroid you need a much lower TSH well under 1 because your thyroid when functioning correctly used to make both T4 and T3 but now you only get T4 some of which must be used to replace the T3 you no longer make leaving a deficit of T4 compared to the normal population. Many doctors are so stupid or badly trained on thyroid matters they simply do not know or take this reality into consideration where dosage is concerned and foolishly believe any value in the range will do to the point of disregarding a patient who still had obvious thyroid symptoms by implying it is all in the head. I wish they would get the facts into their thick skulls and administer medicine based on a proper understanding of science not fatous fantasy.

Your TSH now is higher than mine was when I started treatment. You are hypothyroid and inadequately treated. First thing to do is read the links above people have given you, print off the Dr Toft article and book yourself a new appointment at the doctors. Ask the receptionist if any of the GP's have a particular interest or success with hypothyroid patients. If there is one, grab them! If not just pick the next on the list. You might have to work through a few! But you can do it. You will feel better with more replacement hormone.

Hidden
Hidden

This is a very good link, posted by Seaside Susie, an admin, on another thread. Gives the guidelines of an NHS lab for proper thyroid treatment

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

Even though they consider 4 - 12 miu/L as only "Mildly elevated" TSH, I found it really helpful

Look for the table:

"Thyroxine Replacement Therapy in Primary Hypothyroidism"

A TSH of anything over 2 is "Likely under Replacement" of thyroxine

0.2-2 is "Sufficient Replacement"

< 2 is "Over replacement"

But even as low as 0.05-0.2 is only "Possibly" over replacement

Hidden
Hidden

I think that is brilliant because it gives plenty of leeway for us uncooperative patients who happen to be within the reference ranges but still stubbornly insist on feeling poorly!!!

Hidden
Hidden

A picture comes to mind of Oliver Twist, holding up an empty bowl labelled "Levothyroxine" standing pathetically in front of a cross medic saying "Please sir, can I have some more?" :-D

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