first post

Hello this is my first post I joined a while ago but never posted I am feeling very low and very alone I was diagnosed over 3 years ago as hypothyroid but I have suspected been so for 9 years after the birth of my daughter, since then my health has gotten worse, I am at my dr's every few weeks mostly in tears, I've been suffering from migraines and fatigue which is getting worse since the beginning of this year my migraines have increased from 4 to up to 18 days a month. basically I am trying different migraine meds but keep gaining weight due to the side effects plus not found any meds that stop the migraines yet I am convinced the migraines are linked to my thyroid. I've asked my g.p for a referral to an endo been told no twice as my blood tests are normal - yet the d.r can't seem to explain to me why I don't feel normal?

I go to bed at 9pm at night, I am always tired, I have a low body temp, I have a swollen tongue, slow hair growth my hair is falling out in clumps, I am cold all the time I gain weight easily can't seem to lose weigh if I go on a diet it results in more migraines then I get down feeling a failure at not being able to do something simple like lose weight, I feel so alone, due to the migraines and the fatigue I cannot exercise which makes me feel more down, trying to stay positive but I can't see a way out I been to see different gp's, locums over the years and all I get is a sympathetic look I am forty and a single parent I shouldn't be going to bed the same time as my kids. I have paid for hormone testing and gene testing , allergy testing I was on a gluten free diet for almost 2 years I take vitamins and read everything I can on my thyroid to try and educate and heal myself as I feel so let down by the dr's . I am going to ask for a copy of my blood test results and I would like to try combination therapy but I know my g.p will say no as the token response is your thyroid is normal' anyone have any suggestions? private endo? I cannot go on like this

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  • Hello tootired,

    Welcome to our forum and sorry to hear that you are feeling so unwell.

    It must be difficult being a single parent with children when you are feeling so ill.

    There are many members on the forum who have either been neglected by their doctor or told there is nothing wrong with them, even though many showed clear symptoms of hypothyroidism.

    Your symptoms could all be attributed to low thyroid hormones but unfortunately we can not be sure until you advise of a recent thyroid hormone blood test result.

    If you post your results complete with ranges (numbers in brackets) members will comment. Also post any Vit/iron test results again with ranges and medication and dosage.

    Many members have found they function better at a different level to what GP's call "normal". There is a lot of good advice and support to be given here and many of us self medicate thyroid hormone.

    Take care tootired,

    Flower

  • Hi yes I only wish I had my thyroid tested when I was healthy that way I could have something to compare it too, I need to get exact figures then look for a private endo I think, thanks I post again once I get my results

  • Tootired,

    There is no need to know what your baseline was because your thyroid function has changed.

    If you post results then members will advise if they can see a problem.

    Members can also advise of sympathetic endos/doctors in their areas and what dose adjustments they consider to be necessary.

    Flower

  • Welcome to our forum Tootired and you are yet another person let down by the medical profession. I feel very sorry for you at present as you've had no help at all. Probably they think you are a hypochondriac when all the time all you want is proper medicating with thyroid hormones.

    You have probably hit the nail on the head when you've suggested than maybe your condition began after childbirth. That's quite common.

    When you had your blood test, did you get the earliest appointment and fast and leave 24 hours between your dose of levo and the test? If not, ask for the test to be redone, also ask for an antibodies test, a TSH, T4, T3, Free T4 and Free T3, Vitamin B12, Vit D, iron, ferritin and folate.

    Your doctor may say you are 'normal' but what he means is that your TSH is somewhere within the 'normal range' - that doesn't mean that the patient has normal health and I would like all these doctors to learn something about the thyroid gland. That would appear to be when they learn to they listen to their patients and know and diagnose by clinical symptoms rather than the TSH only.

    So, you can now start to try to heal yourself if the doctor wont/cant fathom why you still have these symptoms. He has a cheek not to refer you to an Endocrinologist but if I was a betting woman, I bet you are undertreated.

    Just tell him you are fed up with being permanently unwell with no input from the medical profession to solve it. You would like a Full Thyroid Function Test plus vitamins/minerals to get to the bottom of it.

    This is an interpretation of blood test results and if your TSH is higher you are not on sufficient medication as you will see if you read down the list. This list is for undiagnosed/untreated patients so if you are 'treated' your TSH should be low or suppressed and your T's should be towards the upper part of the range - not below.

    thyroiduk.org.uk/tuk/testin...

    If he wont do these (sometimes the labs don't if the TSH is 'in range') if you can afford to get a free T3 yourself it might be worth it.

  • Hi I didn't fast or have 24 hours between my levo dose, for my last blood test that's good to know for the next time, yes I feel very let down, I don't need sympathy I just help I want to get on with my life I feel I am stuck in limbo but all the drs are seeing is a hysterical woman, as for the referral to the endo I practically begged it was the endo who wrote back saying they wouldn't even see me as my blood tests were normal, recently I tried again but pushing to see if I could get a referral due to my migraines but the endo wrote to my gp saying there's no link between migraines and thyroid!- I never had a migraine before my thyroid was dodgy! thanks for the info I feel better informed already :)

  • A thought - always check the make of levothyroxine and stick to that one for a while as sometimes we have to 'settle' into it and raise it high enough to relieve our symptoms. Also it could be the fillers/binders in levo which can give us symptoms and a change to another make could rectify it. We used to have a Brand of levo called Eltroxin which many found very good but the company withdrew that and made generic levo instead. Probably get more profit with the generics.

  • Hi tootired, I totally sympathize with you as I suffered with migraines most of my life. My diagnosis of Migraine came years before I was diagnosed with Hypothyroidism. I'm sure there must be a connection between Migraines and Hypothyroidism.

    I used to get 2 or 3 migraines a week and the only drug that helped was Pizotifen, the side effects do include weight gain, but without it I had no life at all. It does take a while to get to the right dose, I ended up on double the usual dose, but it did stop most of them.

    There is light at the end of the tunnel! I am now on sufficient Thyroid hormone and the migraines are subsiding, so I am currently reducing the Pizotifen, hopefully I will not have to take it anymore.

  • Hello too tired, sorry to read your post aand understand the frustration you're feeling as well. So many write about their doctors attitudes, mine is the same in France, they often want to just give you anti-depressants or treat you as hypochondriac.

    Have a think about previous illnesses or conditions you may have had before the Hypothyroidism was initially diagnosed, or even anything you may have had since. symptoms or side effects of meds taken then or now. sorry. It I take a different approach now to my condition, I was diagnosed Hashimoto's eRlier this year - one thing that is certain, is that I have an Autoimmune condition, and too many coincidences with other symptoms or conditions I've had in childhood or adulthood.

    I've been doing that and can make a link from birth to now, given I had a TB gland removed or operated on when a baby. it may have caused a problem with my thyroid, so that's my next step, and given I'm now 68' not going to be easy! What gland?

    I hope you manage to get things sorted quickly for yourself.

  • yes I am very frustrated I was perfectly healthy before I had my children never went to the dr's I was slim always on the go had two jobs and a very active social life all that changed when I had my kids. I think I had the underactive thyroid for about 6 years before I was diagnosed very difficulty to pinpoint when as pregnancy changes your body so much mine obviously never went back to normal

    I know I have an underactive thyroid there is a family history 3 aunts and my maternal grand mother had it but I am unsure wether my gran had hashimotos or not? she died in her early 50s and had her thryroid removed and also suffered from the migraines, my aunt is waiting to get her thyroid removed ? does this only happen with hashimotos? thanks for your reply

  • Hi too tired, so sorry to hear you are feeling so poorly. I would say get your B12 levels tested, as so many symptoms of low B12 are the same as thyroid symptoms. I fell into this awful state of feeling worse and worse and more and more tired, I was sleeping all night and most of the day too! Eventually a doctor at my surgery did a more thorough blood test, and low and behold my B12 was low enough to need treatment. Here I am eighteen months on getting regular injections and feeling much better. Incidentally, they have recently found my VitD is low too, so I'm supplementing that now. Again the symptoms can be aching joints and muscles, so ask for it to be checked too. At least you will rule these things out by getting them checked. Good luck with everything. MariLiz

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