Newbie needing advice,please

Hi All,

Let me introduce myself. I am a 56 year old....well, 57 tomorrow....woman and I have been really poorly for some months and have three other autoimmune diseases.....Type 1 Diabetes(I was actually wrongly diagnosed and treated as a Type 2 for the first five years), Vitiligo and Alopecia Areata, so I know getting another autoimmune thing in my group was always on the cards. This autoimmune hypothyroidism diagnosis has come at the end of a year that has left me wondering if I am ever going to feel well again.. First I got a frozen shoulder, which was so painful and along with that I had lots of aches and pains that seemed to come and go, I was dropping things, I became forgetful when talking and had awful insomnia that went on for months. I was sent to a neurologist, who told me I had blocked nerves in my brain and put me on anti depressants to help with this supposed nerve problem. Sadly, I had bad reactions to medications prescribed this year, including severe vomiting and diarrhoea, blackouts and massive panic attacks .I'm sure it was the medication because as soon as I stopped each tablet, these horrible side effects stopped.

Well, at the end of August I felt SO ill and apparently was going into Ketoacidosis. I spent a week in hospital whilst they did lots of tests and finally found I then had glandular fever too. It put me in bed for more or less two months. Then I had a vitreous detachment, which has left me with floaters in my eye. Since then, just as I thought I was getting back on my feet, I started to have episodes, when out and about, where I'd suddenly feel like everything was 'racing' inside my body. My legs felt as though they wouldn't hold me up, I'd then get bad pins and needles in my legs, would start shivering, breathing super fast and felt 'detached' from my surroundings and out of control. Three times shop staff called paramedics out to me and apart from the first time a paramedic telling me I had tachycardia, their tests were all fine. I couldn't understand why this would happen so randomly and it was quite frightening but I am a determined person, so it won't stop me going out.

I also ,even though I lost weight when the G.F. was doing its thing, had started to put on a bit of weight, my hair is falling out and I always seem to have cold hands and feet.(Though in the evening I have episodes of hot flushes and have beads of sweat running down me......not sure if that was the G.F. Hypothyroidism appearing or signs of a Diabetic Hypo but you can see why it's difficult to assess!)

Anyway, I was told last week, my last blood tests were to be redone and the last paramedic sent me to the G.P. to discuss whatever the problem was with the blood tests. This was when I was told about the hypothyroidism. My blood tests showed a TSH of 4.91 and a T4 of 12.3. As I say, the blood tests are to be re-done on Tuesday but having had a read around the site here, I see there are other markers in blood tests when dealing with Hypothyroidism and I wonder if some kind soul here could advise me if I should ask for any of these to be included in my blood tests to be done on Tuesday?

I don't think doctor's like it when I query their judgement but I like to research and help myself in dealing with things because to my mind better knowledge can mean better understanding and control of any condition.

I read somewhere that Hypothyroidism(or treatment of it) can interfere with how insulin is taken up in the body. Can anyone, please, give me any more info about that? That is one of my biggest fears because up until now, I have managed good diabetic control and I don't want to lose that.

I am really glad to have found this site because I was starting to feel that I might be going mad recently, with these paramedic 'episodes'. My G.P. said they sounded like panic attacks and informed me I am down as 'an anxious person' in my medical notes, which makes me feel like some worrying hypochondriac. Sadly, I only joined this practice a year ago, so all they've seen of me is backwards and forwards with complaints, so who could blame them for coming to that conclusion?

Prior to my frozen shoulder I rarely went to a doctor's because it's something I hate doing. I've always been a 'coper'. I've had to be. My father died prematurely from Motor Neurone Disease, I have a severely disabled brother (he has cerebral Palsy, epilepsy and has had to undergo a serious operation this year), my mother is in end stage heart failure and up until I asked my sister to step up and help a bit more, it was me who would always be in an ambulance with my brother or mother but my sister took on board what I said and has since been brilliant but the point is....I coped......I don't like the fact my health is now preventing me from 'being there' like I was and panic attacks are not me.

My doctor might think I'm an anxious person but I notice panic attacks can also be a symptom of hypothyroidism, which in a way, is a relief to me because it reassures me I'm not going mad.

Sorry this has turned into a massively overlong post and if you haven't nodded off, thank you for reading.

Any advice or tips would be hugely appreciated.

Thank you.

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12 Replies

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  • Meant to add in my first posting that I also have problems with choking fits when eating at the mo'. It feels like my throat is constantly partially blocked but my G.P. said this also is just down to 'anxiety'. Again, I notice, actually, this is on the list of symptoms of hypothyroidism. Is this something other members on this site have?

  • Panic attacks certainly do go along with Undiagnosed hypothyroidism, and glandular fever is certainly a pre cursor to hypothyroidism. You seem to have the right idea and your post makes perfect sense....

    A tsh of nearly 5 is not good and although some doctors will ignore it along with the wait and see mantra, its much better to be treated. Have a read of dt tofts book... Understanding thyroid Available for less than £5 on amazon and in chemists. He suggests giving meds early. Also, point out to your doc that the society for endocrinology issued a press release in April 2010. Which stated that a tsh of more than. 4 puts you at greater risk of heart problems.. The press releases are freely available if you google them.

    Blood tests need to be as early as possible, that's when the tsh. Is highest.

    Other markers for hypothyroidism are high cholesterol.... In fact this used to be the sole method, of diagnosis,along with clinical observation and judgment. Ha! Fat chance of that now a days.

    Even the inventor of the tsh test, dr Robert utiger said he hoed it would not be used on its own to diagnose, but would be part of a diagnosis,,,, ( I am paraphrasing here).

    List your signs and symptoms and request a therapeutic trial of levothyroxine. Lists of symptoms can be found at thyroiduk.org.uk

    Xx g

  • Thank you for that info. Well my last cholesterol reading was okay, in fact it was outside normal level range for the good cholesterol bit and doctor was pleased with that.

    She did say she will probably start me on Levothyroxine next week. So we shall see.

  • Chocoholic, when you start Levothyroxine take it 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 vitamin D3, calcium, iron and oestrogen.

    You should have a thyroid blood test 6/8 weeks after starting Levothyroxine to check your levels and increase your dose. Have the blood test early in the morning when TSH is highest.

    Always request a printout of test results with lab ref ranges (the figures in brackets after your results) so you can monitor your progress and post up the results if you want advice or comments.

    Ask your GP to test thyroid peroxidase and thyroglogulin antibodies to confirm or rule out autoimmune thyroid disease and 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 (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.

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

  • Thanks,clutter. I wrote to my G.P. with copies of info from this site about blood tests I think I'd like done in the morning, so I hope she agrees to them being done.

  • Hiya,

    From what you had described it would appear that you have hypothyroidism. Hypothyroidism and diabetes are linked because the glands, thyroid and pancreas, are all part of the endocrine system and these medical problems all act on each other.

    I started with hot flushes, weight gain, fatigue and general feeling of being unwell over 10 years ago and I thought it was the start of an early menopause, I was 40 at the time. My GP said I was too young and poo pooed the idea. I then was diagnosed with T2 diabetes just over 6 years ago after getting thrush that would not clear up. The fatigue and weight gain had got worse and I put it down to work overload. Then about 4 months later I was ill with a chest infection, pluerisy, throat infection and swollen glands, this was January 2009. I never believed I was diabetic and refused to take medication but, tried to control my blood sugar with diet and exercise. However, I could not get my blood sugar low enough even though I lost a stone in weight and exercised like mad when I wasn't working. I had a very busy job managing a school nursery and teaching nearly 50 children aged 3 to 5 every day. Then 3 years ago I started getting more ill with a tight chest, a pain in my left side and problems with my eyes. I started on the diabetes medical thinking it would help but it did not. After tests and scans I was diagnosed with suspected thyroid cancer and had my right thyroid gland removed on the 28th February 2013. The result came back that I had follicular variant papillary thyroid cancer and my surgeon said I'd had it at least 4 years and probably longer and that I probably had been hypothyroid for sometime. It would seem my thyroid cancer caused the diabetes. I am still battling hypothyroidism and diabetes but slowly getting there.

    As regards your question hypothyroidism causes low blood sugar and hypos (I'd had these but my GP didn't believe me), and depending on your hypothyroidism medication it can cause hyperglyceamia. It's a very difficult situation to be in but you need to be referred to an endocrinologist that specialises in diabetes as your GP may not be skilled enough to support you, especially as you have all these other medical problems too.

    Good luck and if you need any help then, do not hesitate to PM me.

    TT x.

  • Thanks for your reply T.T. I'm sorry you've had to go through thyroid cancer.that must have been a real worry for you.

    I must admit, I'm surprised my throat has not been checked out as I really hate this feeling of it being partially blocked but assume the doctor thinks the TSH AND T4 levels being awry is all she needs for her diagnosis.

    I am wary of having the wrong sort of hypothyroidism being diagnosed I suppose. Having been wrongly diagnosed as a Type 2 diabetic 11 years ago and only finding out I was actually Type 1 five years later, it knocked my faith in doctors a bit. I think there is this assumption that if you are a bit older (I was 45 at time of diagnosis) you MUST be a Type 2. It was only my own research that had me requesting a referral to a specialist and asking for a GAD test,that indeed came back positive for anti-bodies, that I got a correct Type 1 diagnosis.

    I do believe knowledge is a good thing when it comes to one's own health.

    The more we know, the better control we can take ourselves and the less we have to bother doctors.

  • Hi Chocoholic 17,

    Thanks for your reply.

    I sometimes wonder if I'm actually T1 diabetic because I'm not your typical T2 diabetic that is very overweight and eating and unhealthy diet of refined carbs and not exercising. I admit I was a bit overweight but not in the clinically obese or anything and I ate a very healthy diet and exercised by doing aerobics, walking my dog and aquafit. I think I was most probably hypothyroid for sometime prior to being told I was T2. What is the GAD test? I looked online and it throws up that it is a general anxiety text. I'd appreciate it if you could provide a web link so I can check it out better and perhaps get my endo to do the test when I see him next week. I've wondered if I'm T1 because my dad and sister were both T1 and that's not supposed to be hereditary.

    Thanks for your help.

    TT xx.

  • Hi TT,

    I must admit, when I read your post before, it crossed my mind if you might be Type 1. Now you've told me its in your family too, I'd like to bet you are.

    Type 1 is an autoimmune disease and Type 2 is not. Often, where there is one family member with autoimmune issues, there will be others.

    I'm not sure how to post a link here but I just checked and there are details about the GAD test (and no, it's nothing to do with anxiety) on the diabetes.co.uk website.

    I'd definitely ask your endocrinologist to do this test for you. It was only down to me requesting a GAD test myself, that I got my correct diagnosis, so sometimes it's really worth checking these things out.

    Wishing you all the best.

    Choccie.

  • Hiya,

    I was always led to believe that T1 diabetes was not hereditary and that T2 was because it was more lifestyle related and you eat what your parents and siblings eat. I never thought I was T2 because I've never fitted the typical profile for a T2 diabetic. I'm seeing my endo on Tuesday and I'm going to ask him to do the GAD test. Many thanks for telling me about it.

    Have a good weekend.

    TT xx

  • Well, my doctor phoned today to say my thyroid levels have 'normalised' this week. Stupidly I forgot to ask what my levels were, although she said they were slap bang in the middle again which I find a bit hard to believe as I've been borderline for some time and she told me last week I DID have hypothyroidism. Don't get me wrong, I am pleased if she's right. I don't want another autoimmune condition but what has really upset me is that she is putting all my symptoms down to anxiety and wants to put me on anti depressants.no way Jose!! I now have my mother going on at me to just accept what the doctor says and take the tablets but I know my body and know this isn't just anxiety.

    I asked the doctor why my throat feels constantly like it's partially blocked. I am choking on my food when trying to eat but again she says it's all anxiety.

    I don't think I can cope with any more. I just want to get on with my life but where do I go from here? I have no energy or will to do anything right now.

  • I went back to the surgery to get a second opinion from the leading G.P. at our practice. He is so kind and listened intently to me. I then found out my antibodies blood test results ARENT EVEN BACK YET so how the hell that other doctor could change her mind from autoimmune hypothyroidism to 'just' anxiety with a need for antidepressants, WITHOUT the blood test results, is beyond me.

    The doctor I saw this time is lining up an ultrasound on my throat, to see if there is anything that might be causing me to choke when eating. He also says he will wait to see if my antibodies are raised in the outstanding blood tests and IF they are, he will have no hesitation in starting me on thyroid medication. I could have kissed him.

    Obviously I dont WANT another autoimmune condition. I just want a CORRECT diagnosis and appropriate treatment for whatever that may be.

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