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Recently diagnosed with severe Hypothyroidism

Posted , 6 users are following.

sharon3005
sharon3005

Hi folks,

I hope you can give me advice or any tips.

I started with joint pain in July last year and was referred to Rhuematologist and was told I had Palindromic Arthritis and was treated with steroid injections, anti inflammatory meds and pain killers.  I then started becoming very unwell with alot of symptoms, then finally last week could not take anymore with now added  constant nausea, exhaustion and confusion and memory loss.

Visited GP again and gave her a written list and told here no way is this arthritis, she looked at list and said " I will test your thyroid". I told her this had already been done in December and was told by hospital that my Pituitary gland was releasing to high and that someone should have been in touch with me and to speak to my GP next day, which I did and was told they would just test it again in 3 months (never happened).

Gp then looked at my results and looked shocked (as it was her that I spoke to re: Pituitary gland) then said to me "this is what is wrong with you, it is your thyroid, it is low,  I will take some bloods today as it will be worse now since December".  Gp telephoned me with results a couple of days later to be told I have severe hypothyroidism, I asked what that meant and was told it was practically undetectable, basically I had no thyorid left. I was advised to pick up prescription 100mg Levothyroxine at desk and start meds straight away and to go back in 4 weeks for another blood test.

I have tried looking at sites and thought the best place to come was to people that have it.

I am underweight so I do not need to lose weight which is slightly weird as from what I have read it says I should be overweight and once you get on meds then you should lose weight, which I cant afford to do.

I have not been given any information on this condition and would really appreciate any advice or tips you can give me.  Is there anything I should or should not do?  Is there foods I should eat or avoid? Excercise? Can I drink alcholol?

Thank you

 

1 like, 19 replies

19 Replies

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  • elaine75237
    elaine75237 sharon3005

    Posted

    Hi Sharon I had hyper first which could not be controlled with meds so got iodine treatment and I'm now hypo. Firstly I hope you are feeling a bit better at least now you have been properly diagnosed and receiving the correct treatment. There are loads of symptoms and I'm not a professional but some people I think have hardly any and some have all.

    I really suffer from low low energy, just so tired. My muscles ache and I get what you would call restless legs sometimes. I put on alot of weight but have suffered over the past year with anxiety ( which can be through thyroid problems if not stabilised) and have lost quite a bit and even more recently. I was on 600 mcgs of levothyroxine a day, the highest my Dr had ever prescribed but it has been up and down alot. I don't drink so I'm not sure if it will affect you or not. Exercise is good as long as your Dr says it's ok, just don't overdo it. Eat well, I get some tummy problems, IBS only really came on now that I think of it when my thyroid problems started. I try to avoid alot of spicy foods and too much cheese or dairy products. Might not be the same for you though. If you feel off at all go back to the Dr as I have had my bloods taken alot trying to get the right dose of medicine for me. Good luck with everything. Hope this helps. Feel free to ask anything else.cheesygrin

    • sharon3005
      sharon3005 elaine75237

      Posted

      thanks Elaine I really appreciate it.

      GP said I have multiple symptoms, don't I know it! It's just been so awful. the frightening thing is by reading the forum and most people still suffer trying to get levels right after months and months. I've only been on Levo since tues and have to say I feel less tired. I think each day some symptoms one by one lessen slightly although my joint pain was lessening then came back worse yesterday. I have ibs symptoms also and changed to gluten free which seems to help. I have also been suffering anxiety in last few months, arrgg.

      The facts I know see though is there is no quick fix for this which is disappointing.

    • barbara98940
      barbara98940 elaine75237

      Posted

      Elaine, 600mcg is a very high dose to be on.

      Being on too high a dose would give you hyperthyroid symptoms, one of which is anxiety.

      You can do a quick check yourself how much thyroxine you are likely to need by doing the calculation:

      1.7mcg x body weight in kg.

      For a 600mcg dose you would need to weigh 353kg or 25 stone.

  • margaret21458
    margaret21458 sharon3005

    Posted

    Hi Sharon,

    If I can ask, what was your thyroid level?

    Ty, Maggie

    • sharon3005
      sharon3005 margaret21458

      Posted

      Hi Maggie ,

      All I know is in Dec my pituitary gland was releasing high levels (no idea what that meant)... Then last week when GP looked at results from Dec she said my thyroid was low and showed me the screen and I seen 7.1 (again, no idea what that meant) so when she done bloods last week and results come back she said it was practically undetectable and her words were "basically you don't have any" 😢

  • elaine75237
    elaine75237 sharon3005

    Posted

    Hi Sharon, I must say it's been hard to stabilise my medication but for alot of people it is fine so I hope you are one of the lucky ones. The joint pain and muscle aches for me are lingering and that is so annoying. Hopefully your tiredness will continue to subside and you will feel the beneficial effects of the medicine soon. My worst problem is the anxiety it has been so awful. I would say if you feel bad with anxiety talk to your Dr right away. Unfortunately I had really bad reactions to anxiety meds so can't take them but have been having therapy. Best of luck to you and hope you feel better every day.cheesygrin
    • sharon3005
      sharon3005 elaine75237

      Posted

      Thank you. I really for you regarding anxiety, I'm 45 now but suffered really bad anxiety early 20's but got through the it with therapy and its all about learning to live with it, dealing with it in ways which therapy will teach you and not allow it to control you. Over the years I was lucky if I ever suffered a couple of days of anxiety every 2-3 yrs whereas I noticed I was having more and more episodes over the last few months on top of all the other symptoms. The fortunate thing with me is I know how to deal with it and when you master that it become less and less frightening. Hope you feel better soon and they get your meds right 😄
  • elaine75237
    elaine75237 sharon3005

    Posted

    Awe thank you Sharon. It's funny how thyroid problems can run hand in hand with anxiety/depression. I am getting better with the help of therapy, it's just a hard slog. For a while there it was my whole life. Now I am learning to accept ok I have anxiety but I can still get on with my life. That's really great that you got through it, something to be very proud of. Hopefully we will both feel better really soon. Onwards and upwards. 

    Thanks again.cheesygrin

    • cindy30745
      cindy30745 elaine75237

      Posted

      Elaine Glad to see that you are feeling better wuththe help of therapy.

      Hello Elaine75237

      Glad to hear that you are getting better with the help of therapy. Is that cbt by any chance? Do you listen to relaxation tapes?

      I suffer tremendous anxiety due to hyperthroid which fluctuates from hyper to hypo then back again. May I ask what treatment are you on for your hypo problem? 

      Do you have any muscular problems?

    • cindy30745
      cindy30745 elaine75237

      Posted

      Sorry about previous message . It was sent accidentally without completing the editing.

       

  • barbara98940
    barbara98940 sharon3005

    Posted

    Hi, you sound like. me when I was first diagnosed.

    As your thyroid is that bad, you need to be tested for adrenal gland problems. Reaearch Cushings and Addisons disease.

    Also starting off on 100mcg when your thyroid is undetectable is unusual, the usual starting dose is 25-50mcg increasing every couple of weeks especially if you are over 50. This gives your body time to adjust to the meds. You can do a quick check yourself how much thyroxine you are likely to need by doing the calculation:

    1.7mcg x body weight in kg.

  • elaine75237
    elaine75237 sharon3005

    Posted

    Hi Cindy no problem. It started off as CBT but I would say it's whatever is required on the day if you know what I mean ? I go between taking 400mcgs and 600 mcgs of Levothyroxine a day. I also sometimes take Propanolol depending on if my heart is racing or not. I've had quite a bit of bother when hyper and hypo, I do have alot of aches and pains in my bones and muscles. Because I also have anxiety I'm not sure if this is taken seriously or not by my GP. Although I had all these problems before my anxiety was so severe. After going to a clinical hypnotherapist she was so good by the way I got some downloads for muscle relaxation etc... they do help quite a bit. It does get me really fed up I must say and I have to reel my thoughts in or I would go haywire. Did your anxiety juat come on with your thyroid problems ? Hope you feel better soon. I found it easier to deal with thyroid stuff than with anxiety !! cheesygrin
    • cindy30745
      cindy30745 elaine75237

      Posted

      Hello Elaine

      I know where you are coming from regarding the CBT!

      Regarding anxiety issues. I have experienced the normal feelings of anxiety before stressful events such as major surgery, exams etc but nothing could possibly compare to the extreme severe anxiety and depression that enveloped me at the start of what I know know to be a thyroid problem!

      I thought I was breaking down however drs said that I wasn't. 

      So I would say that the anxiety is more difficult to deal with than the condition itsellf albeit anxiety and depression rate very highly on the list of signs and symptoms of both hyper and hypo thyroid diseases.

      I think that this is one of he most horrendous conditions yet the most misunderstood that I have ever come across.

       

  • elaine75237
    elaine75237 sharon3005

    Posted

    Hi Barbara, the last time I had my bloods taken my thyroid was actually low so my levothyroxine was upped again to 500mcgs. The lowest I have been on is 400 and the highest 600. They did think if it was too high that was maybe why my anxiety was bad but it was the opposite. It just seems hard to get the right level. I lost weight when I was hyper and was just over 10 stone, then when I got iodine treatment I put on over 4 stone and now I'm just about 12 stone. That works out to 129.54. Does that mean I should be on 129mcgs of Levothyroxine ? cry
    • barbara98940
      barbara98940 elaine75237

      Posted

      That dosing calculation does indicate you should be on around 129mcg. (Note I'm not medically qualified so it's worth asking your GP about it.) It does make me wonder if there's something else going on that means you need extra thyroxine. Again another question for your GP, the obvious follow up question is 'what could this be?'

      Perhaps others on this forum are able to answer this question, as it's outside my knowledge?

      It's worth doing some research. Dr Peatfield's book might help. Or websites tpauk, or thyroid madness.

    • barbara98940
      barbara98940

      Posted

      It would be worth asking your GP for for a printout of the results then post them and their ranges on here, without them everyone can only use guidelines and generalisations. I'm sorry, didn't mean to concern you, I merely wanted you to be informed - it is is a high dose and excess thyroxine does cause anxiety. Do ask your GP about it.
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