First thanks to all those who gave me support about taking list into Gp. Please can you give me some advice about taking levothyroxine?

Had appointment this morning and although I couldn't tolerate 25mcg levo in January,he has put me back on it,but said to take every other day.I thought I would try taking at night but how long after eating in the evening.

I asked about extra tests for vitamins and minerals but the answer was either the lab wont do them or my blood results don't warrant it.He confirmed that I have antibodies and pulled a face when I told him about locum Gp saying I hadn't got thyroid problems but will get in future.

I asked if it was Hashimotos and he said probably.

results-

Thyroid peroxidase antibody=57 [<35]

TSH=9.4 [0.35-5.5]

freeT4=10.3

He has also given me a follow appointment for a month.

19 Replies

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  • If you cannot tolerate levo at 25mcg he should send you to an Endocrinologist who may give you T3. Your TSH is high and you cannot feel too well.

    Why suffer even more.

    If you do take it at night, don't eat anything for 2 hours before. If you are feeling rough, don't wait for four weeks before seeing him again.

  • I feel absolutely awful,have to force myself to do anything.Thanks for advice about not eating 2 hours before and I will see him before the month is up if symptoms get worse again.Last time I felt even more exhausted and couldn't even lift my arms

  • In case you haven't seen this link cursor to the question April 22, 2007 and read the results of taking a low dose of levo. The fact is that you cannot tolerate it is awful as that is the only meds GP's are told to prescribe.

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

  • Thanks shaws for that link I wil lprint it out for Gp if I have to go again

    Jill

  • I hope your GP is willing to read it as the British Thyroid Association guidelines state that levothyroxine only is the preferred medicaton.

    Unfortunately, that is not the case for many, myself included. I am well now with alternative meds and we have to read and learn as much about thyroid gland conditions/symptoms - as GP's (going only by the TSH) believe symptoms are not connected to a disfunctioning thyroid gland.

    We don't want to be housebound - we wan to be well.

  • Did you have to go privately for your alternative meds?The trouble I have with reading is I just cannot retain information[only happened in the past few years]

    thanks for your support

    Jill

  • I know exactly what you mean by retaining info. I am still like that but hope for improvement but because I feel well I am not complaining.

    Yes, I did have to go private but some Endos have prescribed either T3 or NDT to some forum members.

    If you email louise.warvill@thyroiduk.org (she may be away for a few days) she has a list of NHS Endos or private doctors and there may be one near you if GP not willing. (I don't see why not as you have a reaction to levo).

  • From what you say you have symptoms, but these are still present on 25 mcg of levo and you react badly to the levo. It makes no sense to me that your doctor should suggest this new regime. 25 mcg is a very low dose -12 and a half mcg even lower!

    You are aiming for a situation where your thyroid replacement removes all of your symptoms.

    I would suggest that your GP is way out of his depth, and I think you would be quite within your rights to ask to see an endo NOW. It may be that you are one of the unlucky people for whom levo does not work, but there are other options.

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

    Don't suffer any longer than you have to.

    Jane x x

  • At the absolute, very least get a Full Blood Count - ask your GP. One of the cheapest tests because they do so many. But at its best it can help to indicate iron and vitamin B12 issues (not 100% but better than totally ignoring).

    Also ask for ferritin, vitamin B12, folates, vitamin D. Repeatedly if necessary.

    Rod

  • I had a full blood count and that is why he said that they don't warrant testing.He commented that that all those tests probably came from an american site,when I gave him the list of tests that others on here recommended.

    Jill

  • What were your MCV and RDW numbers?

  • thyroid peroxidase antibody=57 [<35]high

    serum C reactive protein=5[<5

    blood glucose=4.5

    blood sodium=147high

    blood potassium=4.9

    serum creatinine=78

    serum total bilirubin=21

    ALT/GPT=28[8-44]

    serum alkaline phosphatase=62[30-130

    serum albumin=44

    basophil count=0

    percentage basophils=1%

    haemocrit=0.417

    erythrocyte sedimentation rate=5[<12]

    lymphocyte count=3.5 high

    percentage lymphocytes=43%high

    total white cell count=8.2

    red blood cell[RBC]count=4.67

    platelet=213

    neutrophil=3.9

    percentage neutrophils=48%

    monocyte=0.4

    percentage monocytes=4%

    mean corpuscle vol.MCV=89.4

    mean corpuscle haemoglobin[MCH]=29.4

    haemoglobin estimation=137

    eosinophil=0.3

    percentage eosinophils=4%

    I can't find RDW reference

  • I felt dreadful when I first started T4 - horrendous anxiety, headaches, feeling of cold water pouring onto my head. This was on 50mcg of thyroxine. These symptoms lasted for a few weeks but then did settle down.

    What side effects are you getting and how long did you try the 25mcg of thyroxine for? xx

  • I was on it for 2 weeks first week ok second week felt even more exhausted, couldn't lift my arms, felt as if I had a cold that wouldn't break but the worst was facial hair growth. I have always had problems with this and had electrolysis to clear it post menopause.I had noticed a few stray hairs growing on my chin and neck since October and am having electrolysis but there were absolutely no hairs on top lip.As soon as I started levo they grew.

  • A TSH of 9.4 is very high-the 'range' is supposedly below 5!

    Are you lactose intolerant?Is this why you are not getting on with the levo?Please give more information so others can give you their advice!

  • Mine was well into the high 20s when I started levo, in fact my Dr said that 10 was the point at which to start taking it.

  • Locum Gp said that as well but my own Gp said you have antibodies so need treatment

  • Hi Jjily. I was exactly the same as you. My initital TSH was 11 and the Dr put me on 50mcg levothyroxine straight away. I felt soooo ill. I felt like I had been drugged. I couldn't answer a simple question like 2+2 without struggling, I could sleep 24/7 and felt like I had flu.

    My Dr decreased and put me on 25mcg. With time (6 weeks or so) I noticed a very small improvement and then slowly increased up to 100mcg (under consultation). However, my increases have to be done in baby steps or I get all those awful symptoms back again.

  • thanks for that input. I am trying to persevere.So far I have only taken 2 x25mcg tablets over 4 days [1every other day as Gp suggested] today I feel so tired and drugged as you say I haven't been able to do a thing.,also a terrible headache.I will give it a few more days and see how I feel.The Gp said it might be ok with a different brand ---I really hope so

    Best wishes Jill

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