My original question was hair loss ... posted blood tests below as requested

Ok had the appointment with my GP this morning to say that I wasnt happy about lowering the dose of Eltroxin from 1000 mcg to 75 mcg.

I have been to see him so many times in the last few months since he became my new GP 6 months ago he must dread reading my name on his screen.

I thought ok today I'm going to tell him exactly how bad I feel everyday when I wake up because this can't go on ... I wake up every morning wishing I could just stay asleep indefinately because I tremble, shake and feel nauseus , some morning I get dizzy when I get out of bed and fall sideways .

I told him I was concerned with the following and could all these issues be related to my thyroid because I had now read the leaflet in the packet of tabs and researched on line and they all come associated with thyroid problems, he said he didnt think they were .

He thought my weight gain from 53kg to 70 kg over the last 13yrs was partly because I was no longer working for the last 5yrs ..... he thought the hair loss was due to stress, my skin condition which was diagnosed by biopsy as Lichan Planus was due to stress ... my memory loss was caused by stress ... the pains in the muscles and bones in my legs and pelvis he thought were all from the hip Bursitis not thyroid related ( although last week the physiotherapist said she was concerned about the extent of the pain and tenderness as she didnt think it was all bursitis related ). ?

I am so cold all the time that going out in the cold makes me feel ill and I get really stiff.

And for the last 4 weeks my upper eyelids have been swollen especially on the inside corner, I can see it hanging over my eyes.

I sound like I need putting down don't I .... I'm really worried as to what could be wrong with me if my thyroid results are ok ?

He started looking through his little book and was wondering if he should try some T3 lio something it was called.

So I plucked up the courage to say look this has been going on for 12 years and I'm just too tired to do this anymore there must be something wrong with me as the previous years to this I felt really well so can I please go to see an Endocrinolgist he said '' thats a good idea because I'm floudering a bit as I'm no expert with thyroid issues. ''

I also got some copies of my blood results. ( had to pay but didnt mind )

In 1999 I was given a different brand of levothyroxin ... in 2000 I went and told them I didnt feel right so they reluctantly gave me back my previous levothyroxin and still I didnt feel right ( didnt realise at the time it was a different manufacturer ) .. in 2002 my memory started to get quite bad and I mentioned this to GP because at this time she also just stopped the HRT I had been taking for 30 years .. I was told I no longer needed it at my age ( 52 ) so I had to go cold turkey .... the pharmacy asked why it wasn't on my script so I told them , they couldnt believe she had just stopped the high dose of HRT I was on they said it was the equivalant of expecting someone on heroin to go cold turkey.

Anyway months later back I went again about my memory , fogginess , clumsiness etc; and asked if it was HRT related and she said it had nothing to do with the HRT but agreed to give me back half the dose.

But everything was still going pear shaped ... over the following 4 years I saw three different dermotologists because my skin had got so bad all over my body.

I eventually had a biopsy and was diagnosed with Lichan Planus although the dermatologist said he had never seen lichan planus that looked like that before ???? and today I still have to wash etc; with Dermol.

My memory carried on getting worse and so did I physically and mentally :-(

I couldnt remember what you told me to write down here so I wrote it as I read it

Abn value units Range status

06/03/2013

Serum free T4 level Y 22.1 pmol/L ( 9-24 U ) nk

Serum TSH level LO 0.02 mul ( 0.2-4.5 U ) nk

14/09/ 2012

Normal T3

Serum free 4.3 pmol/L ( 2.5- 5.7 U ) nksti

14/9/2012

Serum free T4 LO 19.7 .. .. ( 9-24 U ) nk

Serum TSH LO < 0.02 mu/L ( 0.2-4.5 ) nk

7/02/2012

Serum free T4 Y 20.7 pmol /L ( 9-24 U ) nk

Serum TSH LO < 0.02 mu/L ( 0.2-4.5 U ) nk

I dont know what tests he asked for that the lab said were too expensive

I have the blood counts, magnesium etc; too if you tell me which of the numbers under the heading abn, value , units etc; is the one you really need to see I'll add those too. xx

19 Replies

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  • Your GP was right when he said he was no expert on thyroid problems! I hope your endo appointment helps.

  • Stress the magic tigger. Yes stress is a factor and can cause you to suffer. That is because you are not in control of your body anymore. The prescribed medcines are. They dont fluctuate as the thyroid would do if it was working. Tiny imbalance and bingo we're reeling around wondering who stole our brains or where did that ache come from.

    Lichan Planus is stress related but also is attributed as a sympton of thyroid. My daughter has it and has also thyroid issues. The eye lids swelling etc are also thyroid related.

    Then you hit the nail on the head' menopause'. If you look up menopause symptoms you will recognise thyroid symptons among them. Its the blood tests that show the culprit.

    What your GP did was dangerous stopping you just like that. high or low dose you must be weened down slowly espeically if you are a long term taker.

    It does sound like the thyroids behind this. But.... my dragon in law, likeyou was on HRT for years and when she stopped, weened down, all the symptons of the menopause whammed right into her. Her GP said, yes thats right. HRT doesnt stop them all the time, some women find it haults them and as soon as you stop the HRT, they reappear and you go through the menopause symptons again.

    I'd ask your GP to run a blood test to find out if you are meopausal, pre, or post.

  • Thanks for replying I had a full hysterectomy when I was 30 have taken HRT ever since ( for 35 years ) , Gyne looked after my thyroid in S Africa and he balanced both HRT and Eltroxin according to the blood test results and I felt really well, that is until I came back here and they decide to stop and start everything and the manufactures of Eltroxin kept changing.

    I took between 100mcg and 150 mcg of Eltroxin ..... and between 1.25mg and 1.875mg of Premarin depending on the test results at the time and they were balanced accordingly.

    Thyroid can't have fluctuated since arriving back here ? because its been a steady 100mcg dose . But then saying that the UK thyroid test range is not the same range as SAfrica, America , New Zealand and Australia. So who knows.

    Premarin, the GP dropped down to 1.25mg from 1.875 as soon as I arrived here without tests ? and then stopped it altogether without tests .... then eventually because I felt so bad she gave me 0.625 back. All these numbers and ranges ... Just so confused and fed up.

  • I had a hysterectomy at 25 years, ovaries left in. I was put on HRT after a second hysterectomy to remove the ovaries and slapped on HRT. 2 years later the GP found I was overdosed on Oestrogen and my ovaries were fully firing inside me still.

    At my orgianl hysterectomy I was told I would enter the menopause within 5 years and it would be rough sailing, Im still waiting for my menopause to arrive.

    Stess, is both good and bad stress. Both have similar effects on the body. We mostly associate stress in the negative. Your move here from SA could have triggered a bigger need and may have unbalanced your Endo system.

    I think you should ask for a second opinion on treatment and put the emphasis on treatment that you were on in SA and perfectly fine on being reinstated and used.

  • The free t4 is getting on nicely towards the top of the range, thought it can afford to be just over the top if needs be... (According to dr toft), and your free t3 late last year was around the middle of the range. So not brilliant conversion. To feel well you ought to get the free t3 at the top end of the range ...... And the suppressed tsh is fine so long as the free t3 doesnT go over range.

    You did right telling the doctor that you don not wish to reduce the levothyroxine, but if he is offering you Liothyronine instead. Then grab it. Ideally you would reduce your dose of levothyroxine by about 50 and replace with 10 or 20 of Liothyronine in a split dose.

    (However before everyone starts saying it has to be a 5:1 ratio, I was reading recently that maybe a 3:1 ratio is better for us)

    The lab would have said that free t3 tests and free t4 tests are too expensive...... But as you had them done in September, we have an idea of where you are with it.....

    Did you get your ferritn levels? How about the iron sats?

    After menopause, many women have low progesterone rather than low estrogen. Synthetic progesterone from the doc, comes complete with dire health warnings, but serenity natural cream @£20 for three months worth doesn't Come with any dire warnings. And we can buy it on line easily.

    I would stick to your guns about the level of thyroxine, 75 mcg is a starter dose, a full replacement dose is nearer 150 mcg. And maybe give the t3 a try?

    Do you have the prescription?

    Rose.

  • So how different are my results to the range my body was used to being in before I came here .. you said I had got it the wrong way round :-) 0.3 to 3 and 0.5 to 5 which one is UK .

    Lynn

  • Oh forgot to mention .. havent written them all down yet .... but the tests that were done were

    serum Vit D 106 .. Erythrocyte < 20U ..magnesium 0.86 ( 0.07-100 U .... serum C 11.5 ( <6.0 U ) reactive protein .. normal calcium 2.23 ( 2.15-2.60 U )

    Normal albumin 37 ( 35-52 U ) and also a full blood count

    I was already taking suppliments of Vit D , Vit C , B12 , Vit E and Calmag when these tests were done.

  • Hi Cein,

    I see you have been diagnosed with Lichen Planus. I was diagnosed with this a week ago by a private Dermatologist, the NHS had a long waiting list so I went private. I have had the rash for 4 months now and have tried cortisone cream and now steroid cream but non of them seem to be working. I was told it can last from 3/18 months. Is there anythiny you can recommend that has helped your rash?

    I read online that undertreated hypothyroid can cause this. I have an appointment next week with my Dr and will be asking her if this is caused by the thyroid. My TSH has increased since December, so I will ask the Dr if I can have a higher dose of thyroxine. I don't feel right on 75mg.

    Thanks

  • I have had it for about 8 years .

    I think because it took that long to get a diagnosis and perscibed something that actually worked.

    The '' rash '' actually went last summer but I still have the extremely dry itchy skin and have discovered if I don't use the Dermol it starts coming back.

    The last Dermatologist I saw was excellent and the only one who wanted a skin biopsy done ( the others didn't know what it was ) ... unfortunately he emigrated to Australia last year :-( so I hope I never need to see him again.

    He gave me a big tube of Dermovate Cream .. it says 0.05 % He told me to ignore what the chemist will say as in use it sparingly .... and to apply it generously all over my body twice a day for 4 weeks. ( I had the rash all over my body ) .

    Yes it did reduce the rash and itch ... and then it was about managing it ... sometimes it came back in patches so I still used the Dermovate cream on whatever area when I needed to.

    I don't use soap / bodywash on my body and I was told to shower as normal but only go in the bath once a week if I feel I needed a soak.

    I use '' Dermol 500 lotion '' to wash .. and I use it as a moisturiser as well .

    If I want a bath I put '' Dermol 600 '' in the bath water.

    ( I have more than one bath a week in winter its the only way I can get warm )

    I use Cetomacrogol cream ( formula A ) as a moisturiser when I need extra moisture. It is all provided on perscription by my GP.

    It sounds a pain I know but its basically using products as you would normally .... except your using soapless cream bodywash , cream bath lotion and a moisturiser.

    Hope this helps :-)

  • Thank you for your reply.

    I got the rash on the inside of my arms, wrists, upper legs and the tops of my feet. When more spots are coming out, my skin is itchy and burns. I have'nt got any on my body or back but I have been itching there too. I have the cream to shower and the moisturing cream which I had off my Dr.

    I did not have a biopsy, the Dermatologist seem to know what it was straight away. I just want a good cream to get rid of the rash. I have never had this before and it is a nuisance.

    When I see my Dr next week I will ask her for the Dermovate to see if that is better than the Steroid and cortisone, they did'nt help at all.

    Thanks

  • It started on the inside of my arms and wrists ... then went to the bottom of my back and gradually spread up and down and out from there.

  • I forgot to mention, I read a story on Patient.co.uk about a lady who had Lichen Planus from the age of 13. She had it every 18 months and it lasted for 18 months at a time. She gave birth to a child at 30 years old and was diagnosed with an underactive thyroid. When she was on the right dose, the rash disappeared and she has not had any sign of it for 9 years.

    She thinks there is a connection with being underactive and the rash! I wouldn't be surprised!

  • Hi Lucky,

    That's very interesting ... I think I need to start taking notes of all this info I have gained because by the time I sit in front of the Endo I will have forgotten. Thank you

  • I have an appointment next Tuesday with my Dr and I am going to mention the rash and ask her if there is any connection with my thyroid. My TSH has increased in the last 3 months from 0.98 to 2.88 it should come down not go up.

  • Hi,

    Sorry I don't know much about any of the numbers and results etc;

    I accepted their diagnosis for everything thats happened in the last 12 years .. I never connected any of the things to my thyroid, its only because a series of happenings and then the information I received regarding Goldshield that I came looking for answers ... and my memory is so bad I wouldnt be able to remember the numbers anyway I can't even remember what I had for breakfast some days.

    Anyway good luck I hope you get some answers.

  • Thank you Cein good luck with the Endo too.

  • I suffered with the same kind of puffy eye symptoms before (and after) diagnosis of my thryoid problems and could not get to the bottom of it, until a naturopath said he'd seen it before and it was low adrenal function related. I now take Nutri Adrenal Extra to support my adrenals (which are commonly very often stressed along with low thyroid problems), and the eye problem has cleared up, plus I am better able to tolerate the right dose of thyroxine for me. Adrenal (cortisol) tests are easy to get hold of, although unlikely your GP would prescribe one, but you can check if your adrenals are low.

  • Thank you ...

  • Thank you all for your comments and input :-)

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