New diagnosis

I am newly diagnosed hypo thyroid. After 3-4 years of back and forward to gp with tsh between 3 and 4 but with loads osf symptoms, fatigue, muscle and joint pain, weight gain, hair loss, anxiety, loss of libido to name but a few. I finally stopped going to gp as thought they must be right and I had to just get on with it. However in May I started a new job and worked alongside an old friend. She realised I was not myself and demanded I had a blood test. The out come was a tsh of 8.9, back to gp who started me on 25mcg levothyroxine and told me to go back in 8 weeks for another blood test. I still feel terrible, no change at all. I try to exercise to keep my weight under control but it is such an effort I feel so rough the next dayI wwonderif I am doing more harm than good. I have reduced gluten and caffeine in my diet as well as cutting sugary things. My mum had addisons disease and rheumatoid arthritis as well as sjorgens syndrome. I don't know what to do for the best. Exercise is important but I feel so weak and tired. I am scared my gp will refuse to increase my levothyroxine. Sorry to ramble but I feel all over the place. My rheumatoid factor is negative. Thank you for any advice.

12 Replies

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  • Welcome to the forum, Katynurse.

    25mcg is a ridiculously low dose to start you on and isn't likely to be very helpful. 50mcg-100mcg is the usual starting dose for people under 50 without heart disease. Ask for the follow up blood test in 4 weeks as you will almost certainly need a dose increase. You should also ask for thyroid peroxidase antibodies to be tested to confirm or rule out autoimmune thyroid disease (Hashimoto's).

    Take your Levothyroxine with a full glass of water on an empty stomach one hour before or two hours after food and drink, two hours away from other medication and supplements and four hours away from calcium, iron and oestrogen.

    Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges and members will advise whether supplementation is required.

    thyroiduk.org.uk/tuk/diagno...

  • Thanks for the reply. Apparently my iron studies were normal and my B 12 was 412. I will get exact numbers and ranges. My next appointment is 17th september. I am wondering if I am making it worse by trying to exercise hard until meds right. I am almost frightened to eat because of weight gain. I was 50 this year but have no other health problems. The gp said 25was the normal starting dose. I feel horrible!

  • Never believe a doctor who says blood test results are normal unless you have been given a copy of the results, including reference ranges, and you've had a day or two to read and digest them. Only then can you say whether or not you believe a blood test result is normal.

    To many doctors, a result for something which is 121 with a reference range of 120 - 150 (numbers just made up as an example) is normal. It is in the reference range so it is normal. The fact that really healthy people might tend to have a result that is mid-range (for example) is never mentioned, and quite possibly your doctor doesn't even know this information.

    Even worse, some of them decide that being somewhere within spitting distance of the range is also normal e.g. a result of 116 with a reference range of 120 - 150 is only a bit under so it is not serious and so it is also classified as normal.

    Always, always, always ask for copies of your results including reference ranges. You are entitled to copies by law. Do expect the receptionist to check with the doctor first so you may have to go back another day to actually get them after making a request. Also do not be surprised if you are asked to pay a nominal fee for the results (perhaps 10p per sheet at the most) - enough to cover the cost of the paper and the ink. If it looks like they are trying to wring a profit out of you for printing a few sheets of paper, then you should challenge it.

  • Katy,

    NICE recommends a starting dose of 50mcg-100mcg. Perhaps you could print off the link and show it to your GP cks.nice.org.uk/hypothyroid...

    It would be better to reduce your exercise until your medication is stable as you're depleting energy which you don't have. You need to eat well too else your metabolism will slow down further and, thinking it is in famine mode, will store fat. You're unlikely to lose any weight until your meds are stable. It's likely that most of the weight you've gained is water and a starvation diet isn't going to reduce it.

  • Welcome! So glad you have found us. I was almost spitting blood when u read your post but the info I was going to say has aleady been tabulated so brilliant. Please act on it. Lots of info as well on the Thyroid UK sure.

    One thing I wish I had done was to keep a diary to tabulate how I was feeling, dose changes and how it changed how I was feeling. Now many many years down the line I can't remember the finer details of my journey.

    Good luck!

  • Don't exercise until you feel much better. exercise reduces our T3 which is the active hormone every cell in our body needs to function and yours is too low at present, so you need to reserve as much as you can. Go back even in 2 weeks and tell him you need an increase. We have to read and learn now as much as possible otherwise we will never recover due to the ridiculous guidelines.

  • I'm with shaws on the question about excercising. My new dr prohibits any weight thaining (it increases testosteron which in turn increses prolactin - I am trying to lower it) and aerobic exercising especially those indurance ones - they increase the T3 usage, which isnt a good thing when you lack it in the first place.

  • Thank you everyone for your replies. I am so grateful. I have to confess that I was a member of this forum before but when my gp kept fobbing me of I stopped reading as I thought I'm not hypothyroid so no need. How wrong I was and I apologise.

    My worry now is that I see that I am classed as sub clinical so in theory I should be grateful that my gp started treatment at all and didn't make me wait for another blood test in 3 -6 months? ? My FT4 is 12.2 (range 10 - 20).

    Also I am worried about addison as my mum had it. I know it's very rare but I also understand that gp's don't like adrenal stress and don't really recognise it. What if my tsh has improved and he refuses treatment? I feel worse since starting levothyroxine. On Monday night I did some circuit training with my netball team. Yesterday I was shattered and today I can barely lift my arms and the pain in my hips is horrible. I consider myself fairly fit and I play competitive netball and use a treadmill at home 2 - 3 times a week doing intervals of about 30 minutes. I am sure if I didnt exercise I would be the size of a house. Am I making it worse by exercising? I do confess to trying the 5:2 diets and the dukan but gave up because of feeling awful and minimal weight loss. I don't know what to do for the best to help myself. So to summarise my many worries, subclinical will he stop treatment, addisons and exercise and diet concerns. It's a minefield and I so confused about what to do for the best.

  • If you exercise in your condition, you may actually gain weight, i did. I worked out 7 days a week and was on a strict diet and gained 30 pounds. This is a whole new situation where no matter what you do, the weight will come on..with a low metabolic rate you can't lose. A low dose will actually make you worse..25t4 will further suppress your TSH and you will become more hypo. Some people eventually have to treat themselves.

  • May I ask what you mean when you say "subclinical will he stop treatment" ??

    if you are hypothyroid it is usually for life (hence free prescriptions), and often autoimmune.

    A small dose of 25mcg may be having the effect of stopping the pituitary producing TSH (which stimulates thyroid to produce actual T4/T3 hormone - the feedback loop, stale mate).

    If you described your fatigue after exercise (and in general) your GP may say it's probably CFS/Fibro (mine did).

    Please don't underestimate the importance of vitamins and minerals (these are often low with hypoTs) esp Vit D for joint/muscle pain & iron. They help thyroid function (& other functions).

    Most Docs don't think there's a mid-way regarding adrenals - it's addisons or not addisons...

    You should have blood tests in 6-8 weeks, or earlier if you feel unwell. J :D

  • Hi when you go to give blood make it as early in the morning as possible as that is when the tsh is at its highest, plus if you take your levo first thing leave it until you have had your bloods done.

  • I think that you should look into a drug that balances the immune system called Low Dose Naltrexone..google it. Like me autoimmune disease runs strongly in the family and we can't take any chances. You are going to feel worse with a dose that low.

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