Not Quite Right...........Help Please. - Thyroid UK

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Not Quite Right...........Help Please.

MavyWavy profile image
12 Replies

Hi all,

I'm a 42 year old with hypothyroidism which was diagnosed in 2006. I'm currently on 125mcg of Levo and my T4 and TSH are always within the guideline parameters. I have been to the doctors quite a few times over the last 2 years as I don't 'feel right' as in I'm constantly tired, feet always cold, hair falling out, I'm constipated quite regularly and I'm finding it nigh on impossible to lose weight. When I question these symptoms I'm told 'ooh it's your age' or 'well you do have 3 children and work' which doesn't really help!

Last week I had a blood test after nagging the nurse practitioner again and I had a phone call to say my cholesterol is high but everything else (thyroid tests, glucose, ferritin etc) are all fine and that I've got to go in on Wednesday to discuss this. Could this be my thyroid? I've been on a low fat, low calorie diet now for months (no butter, virtually no bread, nothing fried etc) with little success so I'm a bit gutted my cholesterol is high. I've previously had it checked and it's always been fine.

Sorry for the long post but I really could do with help and advice about what to say/ask for when I go for my appointment as I feel like I'm hitting my head against a brick wall!

Thanks in advance x

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12 Replies
PinkNinja profile image
PinkNinja

Do you know what your TSH and T4 results were? If you do, please post them here. There is normal for you, then there is "normal" according to the NHS which is a very wide range. Most people feel well within a very narrow range. It may be that your results are not right for you.

Generally, it seems that most people on levothyroxine feel well when their TSH is below 1 (or even suppressed in some cases) and their T4 is towards the top of the range.

If your TSH is above 1 then there is plenty of scope for an increase of levo.

Do you know what your ferritin level was? If it is below 70 you may benefit from iron supplements. There has been research that shows that non-anaemic women with ferritin levels below 50 benefit from iron supplements. If yours is below 70 you may find the same thing (I think 50 is an absolute minimum and 70 is a more optimal level).

Sorry if I have confused things. I hope I have been able to help a little.

Carolyn x

MavyWavy profile image
MavyWavy

Thanks for your reply, I will ask for a print out of my last 2 sets of results I think when I go on Wednesday.

MavyWavy profile image
MavyWavy

Carolyn could I also ask where the best place to buy Thyroxine online is if I don't get any joy from the GP?

shaws profile image
shawsAdministrator in reply to MavyWavy

I am sorry but we are bound by the guidelines on the left-hand side:-

Thyroid UK Guidelines

Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.

Thyroid UK cannot be held responsible for any discussions regarding self treatment or the outcome of any such discussions

shaws profile image
shawsAdministrator

You are probably undertreated. A higher cholesterol is a symptom of hypothyroidism which should reduce when on optimum meds.

Can you get a copy of your results before Wednesday for someone to comment before your appointment on Weds.

Dr Toft ex of the British Thyroid Association has this to say about TSH levels:-

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

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).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

MavyWavy profile image
MavyWavy in reply to shaws

Hi

only just got all my results back. TSH, T4 and T3 are all fine although my antithyroid antibodies are 111 (range 0-75) and the lab has put that this is suggestive of autoimmune thyroid disease. My GP however has ignored this and put a note in my record stating that this is ok as I'm already on Levo! Is this alright or should I pursue it?

shaws profile image
shawsAdministrator in reply to MavyWavy

Hi Mavy

No matter that the GP said results are all 'fine' you must get a printout of the TSH, etc and post here complete with the ranges and then someone can answer to the best of their ability. How much levo are you on? Your TSH should be below 1, or under.

MavyWavy profile image
MavyWavy in reply to shaws

Hiya, I'm on 125mcg of Levo, I've got my results, TSH 0.3, T4 20 & T3 4.3 so they are all really good aren't they? It's just my antibodies which are out of range. I can't understand why I feel so terrible!

shaws profile image
shawsAdministrator in reply to MavyWavy

I had more symptoms and felt awful after being prescribed levo. I am fine now as I was able to take an alternative.

This is from Dr Lowe's answer dated February 5, 2008

The physiological measures enable me to determine a patient's metabolic status. If it's low, the measures help me to determine the likely cause, such as too little thyroid hormone regulation. If the patient is using thyroid hormone, the testing also enables me to specific how the dosage is impacting the patient's tissues. Unfortunately, the most widely used tests, the TSH, free T3, and the free T4, simply can't give us any meaningful information about that most important question that Dr. Barnes long ago asked—how is a particular thyroid hormone product and dosage affecting the patient's tissues? I hope this answers your question adequately. All best wishes.

web.archive.org/web/2010122...

MavyWavy profile image
MavyWavy in reply to shaws

Thank you for your help. I may ask if I can have my medication changed when I go the doctors on Friday.

shaws profile image
shawsAdministrator in reply to MavyWavy

I doubt if he will do so, but he may be willing to reduce 50mcg of levo for 10mcg T3.

Doctor's have been instructed to prescribe levo only.

Duchy82 profile image
Duchy82

Definitly your thyroid mine was high when i first was diagnosed and my diet has always been like yours, it has dropped since treatment and due a retest in june.

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