Hi I am new to Thyroid UK Support, but pleased I have found out about it, as I think I have Hypothyroidism [ I have fibromyalgia ] and am

going to the doctor today. I have been feeling very poorly lately, and put it down to the fibro, however, I then came across a book out of the blue, which after reading,I realized I had many of the symptoms of hypothyroidism. I have been told in the past, that blood tests etc., for thyroid problems have come back `normal`, but I have been taking my temperature, and it goes between 36 to 36.4 which I understand is quite low, also, my pulse rate is 50/54 beats a min. I also recently can`t seem to get enough salt[ I`ve always put a lot of salt on my food, but it`s got worse recently ] my eyes are constantly sore and weeping, and I am so fatigue all the time, this has also got worse just lately, to the point, that if I manage to go out for a day, I am in bed or not able to do anything for the next 4/5 days, I am getting pulpultations and all sorts of new things happening. I don`t quite know how my doctor is going to react when I see him, he is a really nice but young doctor, but admitted when I was diagnosed with fibro, he was at a loss as to what to suggest I do, so it will be interesting to see how he will deal with me now. Whatever, I really feel I need some constructive help now, as I am at a loss to know where to go from here [ I usually try and cope on my own ]so if there is anyone out there with any advice for me, I would be extremely grateful. Thank you for reading this.


31 Replies

  • ..glad you have taken this leap of faith ! Congratulations !

  • A good start is knowing this might be the issue :-

    See if you can get any of your "normal" test results from the past. You need values and ranges.

    Take a list of your signs and symptoms and ask whether he can check ferritin (iron), and vits B and D as well as TSH and fT3 and fT4. He will need to write on the blood request for the lab to do the fT3 and fT4 even if the TSH is "in range" as they will only do so if specifically asked.

    See how he's reacting and it might be just one step at a time or he may take it all on board -

    Hope you make some progress


  • Saw the doc., today and told him how awful I am feeling, salt cravings, palpitations, low temperature etc., etc., and said I wanted him to do the tests you suggested, he agreed for the nurse to do them there and then, [he`s quite good with me, because he knows I don`t make a fuss about nothing ]so can only wait now to see what comes up. I told him I thought I might have Hypothyroidism, which he also went along with, so, at least he`s trying to be helpful, however, I do go armed with quite a lot of knowledge, I also asked him what my previous thyroid tests had come out like, and he said they were considered ok being as they were on the half way line, but I know there is something definitely wrong, so hopefully it will get sorted out, I can`t go on feeling this poorly, and also not being able to go out for a day, without then having to spend the next 3/4 days completely exhausted and not able to do anything.

    Anyway, thank you for your help, and I will let you know what happens. Hugs

    Lyndia x

  • Scream !!!!!!!!half way line ....when will they ever teach thyroid correctly in medical school

    tsh should be below 1 and free t4 in the upper quadrant of the range

    problem is GPs order thyroid function tests ...path labs will only do a tsh and if thats below 2.5 the path labs wont do free t4 but if you have central hypothyroid your tsh will be very low but your free t4 will also be very low thus the diagnosis is missed

  • Hi, that is great you have a good Dr. I do too although when I first saw a different Gp about 5 weeks ago they said oh youre TSH level is "Normal" blah blah and kinda sent me away. So after finding this site, thank goodness! I went armed with lots of info about Hypo to my proper GP who I persuaded to do the free T3 & T4 tests, which came back borderline and due to my range of symptoms and very strong family history of HYPO she put me on a low dose of Levo 3 weeks ago. I have to say, im a different person already!! she said it would take 6 weeks to kick in completely! im so happy. So, I hope you get a similar story. I put my results on here for people to comment and it really helped a lot. Good luck Jo x

  • Hi Lyndia,

    Your 'Salt Cravings' caught my eye. :)

    I was diagnosed with Hypothyroidism first, then had most of the Fibromyalgia symptoms months later, I too had a real craving for salt which I told my Doctor, she said it probably wasn't linked, also noted that for years I have no longer sweated under arms, but not sure if the two tie in together though :)

    My Levothyroxine pills for Hypothyroidism was upped again due to my awfully pain full Fibromyalgia symptoms, (though Doc. never suggested it was Fibromyalgia, but several members on Thyroid UK. had done so) Still wasn't well, so was blood tested for vitamin D and prescribed 1.000iu of vit D. daily. Several days later I realised my salt cravings had disappeared.

    Ps. Was on one of our Coastal walk's just round from Land's End when I felt nauseous, giddy, and my feet went like jelly whilst walking over some boulders, I couldn't concentrate where my feet were going, hardly standing up, I just wanted to curl up and sleep. think it could have been heat exhaustion, even though I had been drinking.

    I remember craving salt so badly, as luck would have it, I had a bag of salt and vinegar crisps to hand and out in the middle of nowhere a most needed bench to lie down on appeared. Hubby had to shout at me to get me to walk the last mile to the bus stop, I felt so drunk, but will always remember the craving I had for salt, (but funnily not drink.)

    Always listen to what your body is telling you they say :)

  • So pleased it went well Lyndia - great he listened so far, as people have gone on to say - salt craving can be adrenal . My son has half a teaspoonful of Himalayan salt in water for breakfast and seemed to give him the boost he needed to drive to work. Some people advocate taking it with half a glass of orange juice ( glucose) and half a teaspoonful of cream of tartar ( Potassium) at night to help sleep or in the morning. Just be careful if you have any heart symptoms but might be worth a try for a day, while you work out some of the other puzzle pieces.

  • I had some really weird salt cravings also. Blamed it on change of life. You are the only person I have come across with the same thing. This was all way before I knew I have Hashi. I just got my levels under control. But I still have problems with my legs muscle and tendons and I don't read a lot of people talk about that. Before Meds my arms were weak and joints hurt, puffy face,slurry speech,voice changed,tired,throat felt weird ended up in the ER though I was having a stroke or something. Many test later. I found out and at first they over dosed me and I went Hyper lost like 12 lbs in a week. Did I mention weight gain and heart Palpitations its a mess. I wish you the best and hope they get your situation resolved. This is the best post I have read got some good tips. Wishing everyone good health.

  • Hi 5858, I have just replied to Lyndia about my salt cravings too if you are interested, (see above,)

  • I wasn't listening to my body. I was drooling over pepperocini peppers and would sit in bed and eat a whole jar. Figured it was a menopause and a craving. Now I think it was my thyroid starting to go. Thanks Coastwalker

  • Yes I too thought it was all Menopausal connected, luckily I was put on HRT which has corrected some of my Men problems ;)

  • I was 49 when I was done with menopause. Now 58 and found out around a year ago I have Hashi. I think its been a long process and I just kept blaming my age and ignoring things. That I would not recommend. Until I ended up in the ER thinking I was having a stroke or heart attack. Well I am moving along and most symptoms are gone. Except ….I wonder because I let it go ….could I have damaged tendons and muscles in my legs. Still stiff getting out of the car like I am 85. The Doctors don't seem to think it's related not sure how they can say that after all I have been reading. Thanks for your reply. Susita

  • Hi again 5858,

    Regarding stiffness and muscle pains Hubby and I are looking into taking a bit more vit D3, have been reading up on some info on here about it, but need to work out how much. Hubby has just been diagnosed with RA which is another autoimmune disease and has some Fibromyalgia type symptoms like I had. Vit D has been found to do good for those with RA.

    Try reading up about Vit D, I was amazed how many conditions it was connected with.

    Look down the right hand column of 'Browse by Category' for Vitamins and Minerals.

    Also under the Pinned Posts there is a free down loadable booklet.

  • Thanks Coastwalker for the info. Today I picked up some MSM. I have been reading about it and may give it a try. You may want to take a look at this also. I am going to do the Vit D also. Have a great day!

  • grassrootshealth.org has a graph/matrix showing you what dose to take based on your results. For every 10 units you are under you may need 1000 IU's of VitD. So if your result was 25 and you need to be up around 70 then you need to take around 4500 IU's per day. It's a Canadian site I believe and full of good information about conditions linked to low VitD including cancers.

    M x

  • So sorry to hear you're struggling. I had bad fibromyalgia, great that I can say it in past tense!! I am hypo now, but had to diagnose it myself, my doctor said I was normal Too! ..just low iron!! She finally relented and tested me... and yes what I knew already... unfortunately for a long time!! I take meds daily and have got to the stage, thank goodness, that I see it as a supplement, my body needs it and it(hopefully) is the correct dose. I take 3 x 1000gm of Vitamin E every night since April and my fibro symptoms have disappeared... almost! My breasts, neck and shoulders were extremely sensitive, sore, full of ache! Oh! mustn't forget my knees too! I was having a mamogram and the radiographer, whispered it to me! I haven't looked back since.

    Also what made a big difference for me was keeping to a clean diet. Our bodies are fighting to survive and do everyday things that I took for granted.. like thinking!!! Just healthy food, nothing packaged, or has additives, preservatives, eat what is nutritious for your body, and it will start to heal. Unfortunately, it is not a short-term commitment, I've been clean of all the white stuff, gluten flour, rice, sugar and salt for nearly 2 years. My symptoms come straight back if I eat any, whereas, years ago I would do a weeks detox and that would keep me going for the rest of the year!!!

    Like you I developed a taste for salty stuff! Which was unusual as I always had a sweet tooth! Make sure the salt you eat is sea-salt and not the processed stuff... as everything - keep it natural.

    Just to add, things will get better, I hold down a part-time job now, didn't think this would have been possible last year. ooh I've just remembered, in the early days when I was very ill, not able to do much and was pretty sore!! I took Jacob Teitlebaum's 'Fatigue to Fantastic' research it.

  • ...even sea salt can be processed - if it's white it is processed ! Look out for Himalayan Salt - which is pink and Celtic Salt....which is often grey. There are lots of websites catering for natural salt. When salts are whitened/processed - to make them more attractive - they are stripped of all the precious minerals our body needs.

  • I had the signs for years. Stopped going to the GP. Always told menopause, stress or told go to your dentist if my neck was swollen. I craved salt. Got so weak, had heartburn and could not put one foot in front of another. I fell into a coma. Then my levels were off the scale. It was a Locum who spotted it and sent me straight to a private consultant that day. Luckily we had insurance. Then my husband told me I was turning into my late Father, who died of these symptoms. My blood tests had showed slight borderline thyroid only up to this point. Had the gene test promoted by this website and it came back positive. My 20 year old son, who is so tired all the time also has it. With us it only shows when we are seriously ill. I wish you well. If you want further tests ask this site about this test. It is 60 pounds and results go to GP.

  • Hi, Can you please tell me how to get the 'gene' test done? I have very new to this site and have been so poorly for a long time - I am sure that my daughter suffer from the same..... Like you my doctor has told me my symptons are to do with the menopause.... I have B12 injections and I am low in Iron... I am sure that they are all related.... Can you help ?

  • Low in iron is one of the 1st things to happen in hypothyroid even in children low vit c and vit b levels also occur as a result of the failing thyroid

  • Hi, I am at hospital with him tomorrow, we now understand my Father's odd death and his Mother's. It is the D102 gene test. Done by Regenerous Laboratories Surrey. It is a salvia test. Sent off by them to Luxembourg. They have a website and phone number for GB. Just Google D102. Good luck

  • Hi,

    You must have read my mind!!! - just finished order test....Like you I have not ordered councelling ...I dont need it..just the results...my father passed away 14 years ago...he had a heart problem which wasnt diagnosed for a long time - He went to a private doctor in the end and was told that he had had a 'silent heart attack' at some point...also my mother has been prescribed with medication for underactive thyroid - she has been on this medication for several years... but, thankfully she is being moniterered?

    I do hope everything hope goes accordingly with your sons's app tmw...

  • gracelily,

    The gene is actually the DIO2 gene - that is three letters followed by a number. (Not a letter followed by three numbers.)

    It is possibly vital to get this right if trying to look up any information about it. :-)


  • Thanks, I feel that the gene when damaged can be a lot worse for some families than others.

  • I think I read that it is more severe if you have two copies of the gene - i.e. one from each parent. However I am guessing it is not as simple as that :)

  • Salt craving can also be a sign that your adrenals are struggling. There's a good adrenal questionnaire here adrenalfatigue.org/take-the...

  • Hi there!

    I was just going to say exactly that... Salt cravings are a classic sign of adrenal fatigue in advanced stages. Also an inability to recover and "bounce back" after exercise (needing an exaggerated amount of rest after exertion) is a clear sign of advanced adrenal fatigue. Your symptoms scream of adrenal fatigue and hypothyroidism to me. Both often go together.


    Very unfortunately, traditionally trained conventional GP's don't "believe" in adrenal fatigue. They didn't learn about it in medical school and it does not come up in the catalogue of diseases that they are allowed to diagnose. When it comes to adrenals, if they cannot diagnose Addisons disease, then your adrenals must be perfect.

    This is not true, adrenal fatigue is VERY real. There is plenty of literature out there about it.

    The thyroid gland works together with the adrenal glands in much the same way as your right leg works together with our left leg when you walk... So I will use the analogy. If one leg goes out of whack, the other tries to take over and compensate... inevitably after a while the "good" leg will start to suffer too. The effort is too much. This is why, when in that situation a physiotherapist comes in to deliver treatment, both legs need to be treated simultaneously: the bad leg obviously needs treatment because it is "bad", the "good" leg needs treatment because it is battered after working twice as hard for so long, its muscles have cramped and stiffened and this "good" leg just can't recall how to walk normally, it has adopted bad habits and vitiated its movements as a result of trying to compensate and now needs as much treatment as the "bad" leg, otherwise the patient will never walk straight again.

    The dynamic between an unhealthy thyroid gland and the adrenal glands is similar. With insufficient thyroid hormones, the adrenals are subject to a tremendous amount of pressure, which is why hypothiroidism and adrenal fatigue tend to go together and specialists who know what they are doing treat both simultaneously. In fact there is plenty of literature out there stating that adrenal fatigue must be addressed BEFORE introducing thyroid treatment, as otherwise the treatment won't work properly. This is one of the many reasons why many patients don't respond well when thyroid treatment is first introduced.

    My advice would be to try to find a doctor or therapist who properly understands thyroid and adrenal health, or failing that, do as much reading as possible about both, but especially about adrenal fatigue.

    I wish you all the very best!

  • Hi Chiquitita. I think you`re right about me having adrenal fatigue, Just recently since realising something was greatly amiss [ apart from the fibro ] I can`t even go out for the day now without being knocked out for the next 4/5 days/[ I went away for a week but because, of the journey, I was just about able to do the drive home, so didn't have a holiday at all. I`m noticing this more and more now, and the pain, it is all over my body ,and although I have always been one to keep going, and keep a positive attitude [ I don`t like moaners especially me ] I am finding it VERY difficult, and don`t really know what to do now, I am at a loss, something I didn't ever think I would say. I had tests done last week for hypothyroidism[ Like you, I told the doc .what I thought I had, as I did for the fibro, and insisted he did the tests ]but won`t get the results for another 2 wks as he is going on holiday, however, I only really expect to get the same answer as usual, THEY ARE NORMAL grrrrrrrrrr I know they are not, so I shall insist on going down other avenues, I really can`t go on like much longer, I feel so ill.

    Anyway once again for your comments, I

  • Hi lyndia - don't FORGET to ask for copies of your results so you can post them here with the ranges. Maybe ask for your previous ones too as that may show you an improvement or deterioration. Living in Crete I am used to being given all results/scans etc. to keep - we therefore can monitor our own health and take control.

    We are also taking responsibility for ourselves.....maybe why my health has improved since being in this system for the past 10 years. You did feel involved and no attitude that doctor knows best. For instance if my blood results were available - usually within 2 days - I would just pop into the Haematology Clinic in the next village and collect them and then decide what I need to do. The Doc there usually points out things you may need to act upon. I do that about once a year and then update my GP with the results - so its on her computer ! I think it is scandalous that you have to wait for the return of your GP from holiday. Why can't you have the results NOW. Say you need them as you are consulting a Nutritionist and he/she needs to look at your results - after all some food not good for thyroid :-) :-)

    You could remind them that you are now grown up and will not be traumatised by looking at the results without your GP :-)

    M x

  • Remember there is no such thing as 'norma'l ' in the thyroid world - the results may be within range but that may not be right for you. Remind your GP that in the States the upper limit of the range forTSH was lowered from 5 to 3 in 2003. So if your result is 2.5 then you are near the TOP of the range and need further investigation. Hope he asked for the FT4 and FT3 to be done long with the Anti-bodies.....sorry to nag - just feel for you having to battle....

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