still ill 2 year on: i am on 150mg of tyroxine... - Thyroid UK

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still ill 2 year on

whiteley profile image
6 Replies

i am on 150mg of tyroxine for autoimune hypthyroidisum i fell ill in 2010 my results were at over 12 i feel really ill all the time my results are now at around 1.36 and 15.4 my doctor refurred me twice to specialist who are saying its not my tyhroid my necks hurts all the time around the area of my thyroid hungry all the time constant neausea feeling extreamlly cold and lifeless hands and feet hurt and knees bad headaches and wozzy head and effected vision and a constant feeling of being unwell anyone help also takinjg hrt and docs given me mertasapine anti-depressents

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RedApple profile image
RedAppleAdministrator

Hello Whitely, sorry to read that you're still feeling so poorly. Have you had your vitamin D level investigated? And your vitamin B12 level?

Many of us here have discovered that in addition to sorting out thyroid problems, correcting low levels of vitamin D and / or vitamin B12 has been a very important factor in regaining our health.

editfmrt profile image
editfmrt

Hi Whiteley - things are a bit tough for you at the moment and I expect you know only too well that once you get a label of 'depression' they can't see beyond that.

Looking at your previous posts it seems to me you have already made attempts to get somewhere with this but not had much success yet.

Anti-depressants (my personal view) are a last resort when all organic causes have been CORRECTLY ruled out. Even then, the side effects can be gruesome and do nothing to support optimum treatment of auto immune disorders.

Can you put a systematic plan of action in place? Write everything down that you know about already and consider what options are open to you.

You already know:

1. From private tests you have adrenal problems. I expect this has fallen on deaf ears too. It needs to be considered as a contributory factor.

2. That you have Hashimotos and it is common to have tests 'in range' but still have symptoms that are ignored by endos and GPs alike - especially when they get onto the depression route.

3. I expect you have gathered from reading other posts on this site that thyroxine does not work for everyone - before giving up on this make sure you are not taking it with any other medication or food. You may do much better with an addition of T3 or NDT - instead of or as well as thyroxine.

4. HRT adds another level of complication - thyroid disorders cause menstrual problems. Are you really going through the menopause?

5. Depression goes hand in hand with thyroid disorders and is improved on its own for many people once the right thyroid levels FOR YOU are optimal.

I have not noticed if you have checked all the other areas that people with thyroid disorders often suffer from e.g vitamin and other deficiencies like B12 and other B vitamins, Vitamin D, ferritin to start. These seem to be caused by poor absorption of nutrients but can also be from associated autoimmune disorders. Have you been tested for any of these? If you have, perhaps you could post the levels here and someone will help. If not, and you cannot get your GP to check or cannot afford private tests, you may want to consider supplementing.

I think you have some decisions to make - you can either carry on flogging a dead horse with inadequate NHS treatment through the GP and bad NHS endocrinologists, or you could find a decent NHS endo who is known by people on this site. I think one suggested to you in one of your previous posts was a good endo, in Leamington Spa who sees both private and NHS patients. Then there is the option of going private outside the NHS if funds allow - Dr P deals with adrenal issues as well as thyroid, Dr S believes adrenals will self correct with optimal thyroid treatment.

Even then there is no guarantee - there is no quick fix and it takes time and patience with a systematic approach.

Don't give up - many people on this site have taken a similar journey and managed to improve their health.

nostoneunturned profile image
nostoneunturned

Hi, I see you are on HRT, this can affect levels though might look OK, check out the following links about HRT affecting thyroid levels. FT4 should be high in its range, FT3 should be around 3/4 of its range. I take it that the unnamed levels you quote are TSH and FT4? It is really helpful to specify, and to quote the result plus ranges as many people here can then make deductions from the result's position in the range.

thyroiduk.org.uk/tuk/treatm...

nejm.org/doi/full/10.1056/N...

ncbi.nlm.nih.gov/pubmed/151...

Low thyroid levels can also result from deficiencies as RedApple has said, here they are with the approximate minimal levels needed in brackets:

Vit D (125-175nmol/L or 50-70ng/ml)

Ferritin ( around 90ng/L

B12 ( minimum of 500ng/L or 369pmol/L

folate ( around 10-12ug/L)

Achieving these levels will maximise thyroxine benefit.

The main site of thyroiduk.org has a sheet on thyroid tests you might like to read:

thyroiduk.org.uk/tuk/testin...

I do hope that some of this is helpful to you, you are suffering such a lot right now.

nostoneunturned profile image
nostoneunturned in reply tonostoneunturned

Just been checking on the side effects of the anti-depressant you are on, is it Mirtazapine? Anyway some of the side effects bear a strong resemblance to the problems you mention. Looks to me as though the HRT and the Mirtazapine are doing you no favours, see:

drugs.com/sfx/mirtazapine-s...

fion profile image
fion

I was on martazipine for about 2 month's,had terrible dreams Everynight and memory loss,why Does every doctor hand out pills like sweeties depression and anxiety is the Answer to all ailments.

Jackie profile image
Jackie

Hi I cannot see any mention of Free T3 results or treatment. Often we need T3 on a script as well as T4 but without a test for Ft3 no way of knowing, it can make a huge difference. if GP is not able to do one due to Lab NHS restrictions, there are other ways of getting it done and so important.

Best wishes,

Jackie

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