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Struggling with getting a diagnoses for hypothyroidism

Posted , 7 users are following.

katie21569
katie21569

Hi

I have been experiencing the following symptoms

Heavy and prolonged periods

Unable to loose weight

Extreme tiredness

Cold extremities

Loosing hair

Migraines

Brittle nails

I have been going to my Drs for 18 months and hypothyroidism has never been mentioned. However after feeling particular run down last week end I decided to get a private blood test.

My TSH levels came back at 4.22, and I was advised to see my gp to look at starting a low dose treatment. I went to see them yesterday and they said my level wasn't high enough for treatment but they would repeat the blood test. That result has come back today at 3.86, and the go has said they will not treat. Can anyone offer any advice? Thank you

0 likes, 21 replies

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  • barbara98940
    barbara98940 katie21569

    Posted

    Hi everyone, look up adrenal insufficiency. The test for it is called a synacthen test. Reportedly, the private test is more sensitive than the NHS one. The latter measures the extremes of adrenal gland function (cushings or addisons disease), the private one also measures adrenal insufficiency.
    • barbara98940
      barbara98940

      Posted

      Do check though, it's possible that the NHS adrenal gland test has changed. One article I read said adrenal glands should be checked if one has hypothyroidism as they work together, and a problem with one can result in problems with the other. The best site I have found to explain about addisons disease is betterhealth .vic .gov .au
    • shellyC19
      shellyC19 barbara98940

      Posted

      Hello Barbara:   I agree, in USA we test new Thyroid patients for Cushings and Addison's.  I have been tested for it.  Lucky it was neagative for me.

      I don't know if UK does this routinely or not.  Can you ask for tests in NHS system.  Here a GP can order Thyroid  tests and Cushings/Addison's Tests.  I am not sure about NHS. 

      I do a a tumor bengin on my left adrenal gland.  Lucky for me it is not causing me any trouble as yet.  

      XO Shelly

    • barbara98940
      barbara98940 shellyC19

      Posted

      Hi Shelley, my experience of my GP and the NHS is very positive. If I go to my GP and give my reasons for a particular test, providing my logic is sound, he'll request it for me on the NHS. I had already spoken to him about swapping to NDT and he'd investigated and said he was unable to prescribe it. I got the feeling this was because of his commissioning group constraints, not the NHS (doctors are allowed to prescribe it on a 'named patient basis' providing they take personal responsibility for doing so). He knew I was looking for a private endocrinologist to do so. I shall report back to him, tell him I found one and that I've been prescribed NDT and had the Synacthen test. When I get the results, I'll give him a copy for my medical records. After all, how can he advise on my care, if he is missing key bits of information? The thing is, this relationship has been built up over 22 years and is built on respect and trust. I don't necessarily get the same response from other GPs in the same practice. It seems to depend on the GP and how open they are to 'shared care' and how confident they are to go outside the norm (and therefore the guidelines).
    • shellyC19
      shellyC19 barbara98940

      Posted

      Hello Barbara:  I have used the same GP since 1984.  He knows more and reads up on studies, etc...They found my adrenal tumor by accident when I needed an MRI of my back for sciatic pain. I did see an Endocrinologist Surgeon for it, but it is not a "Functioning Tumor" and is small. If the tumor makes extra adrenal horomones they call it functioning. 

      I am glad to know that a GP in your system can order tests.  I guess that Commissioning groups is there to over see the doc's and make sure they are not doing tests that do not need to be done.

      I know NDT like Armour Thyroid became hard to get in USA.   I used to be on it.  I wonder why NHS has a problem with it?  Maybe it costs more? Some drugs here are not in the insurance plans formulary.

      Well it is good to know how your system works.  XO Shelly

  • gillyches
    gillyches katie21569

    Posted

    Many years ago when I was a teacher I noticed the following symptoms: gaining weight at a fantastic rate, brittle nails, hair that was dry and wayward, dry and itchy skin, pains in joints, getting cold very easily, trouble swallowing from time to time and dropping asleep at the drop of a hat. (This even happened in school when I had to go to the 'sick room' for a nap in free periods and at lunchtime and once even happened in a lesson!!!). Looking up the symptoms I went to the doctor believing I was suffering from thyroid problems...and he sent for a blood test to be done. The results came back in the normal range so he told me I might be suffering from sleep apnoeia ...I went to a sleep clinic and there was nothing wrong. He thought that I might be suffering depression... I told him I wasn't depressed but certainly extremely frustrated that I wasn't being taken seriously!! Eventually he sent me to a neurologist at the local hospital in Nottingham. Yes... a neurologist!!! I managed to bully this poor man into giving me a therapeutic dose of thyroxin... hurrah! Within days I was feeling better. Then five months later I was sent to see an endocrinologist who did a blood test and took me off the medication. I was incandescent with rage about this and wrote him a five page letter about what I felt I was being condemned to... a half-life with all the former symptoms. Well - the symptoms didn't come back and I've been fine since then... thankfully. The dose must have 'kick-started' my system back to normal... my normal (not those of the tests). However, since that time 15 years ago my sister has had her thyroid removed along with her para-thyroids, my younger daughter has had thyroid trouble (she was losing weight massively etc) and was given medication and is now off it after her system stabilising and my older daughter phoned me last night to tell me that she'd got the same symptoms that I'd had and that her doctor has, thankfully, prescribed a therapeutic dose of thyroxin which she will be starting today. Clearly this IS an issue in our family and it was this that helped her doctor to give her the prescription...but I'm sure that there are many folk who are battling this terrible condition and whose doctors are NOT being helpful. My five months on the medication was enough to do the trick...so lean on your doctors and tell them about the terrific results that can sometimes come from taking a therapeutic dose!!

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