Diagnosed with Graves & Hashimoto's but symptoms are Hypo - Doctor useless!!

So i recently had my TSH, FT3 & FT4 checked along with TPOAb and Anti-TSH Receptor AB. my results came back that i was within range on my FT3 & FT4 but my TSH was repressed. My AB levels were very high for both Graves and Hashimoto's leaving my consultant to say i was still Subclinical Hyperthyroid.

I'm not sure how long i've had these symptoms but they have been on and off for years but i've recently been experiencing weight gain (even though i have cut out most sugary foods and eating healthier than i was when i was losing weight and currently do over 100,000 steps a week walking during work according to my Fitbit), dry & sometimes pale skin, hair loss, always feel cold and after i've been working or doing a lot during the day and sit down. if i try to get up after a few minutes i can't move, it becomes really painful and takes ages for me to get up. once i do get up it wears off but getting up is horrible. i also get really bad pains on one or both of my calfs when i stretch. i stop when i feel it starting but if i do it during the night it wakes me up and im crying it hurts so much.

I know that Hashimoto's can make you become Hypo but my doctor is insisting that it could be other things that are causing my symptoms because my recent blood tests show i'm Hyper. I have to wait till after i've had my 24 hour Heart monitor i get palpitations and dizzy and feel like i'm gonna pass out when doing certain exercises) if i still have the symptoms after this then to go in and see them to talk about them in the meantime i'm having to deal with these symptoms.

If it isn't Hypo what do you it could be?

Should i ask for blood tests to check for Hypo?

Any advice is greatly appreciated

24 Replies

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  • Post your results with the ranges so people can give you pointers.

  • I posted my ranges on a post when i first got them but i'll post them again. I have another blood form for a TFT requesting only the FT4 and TSH which i have to have a week before my next consultants app on the 21st June.

    15/03

    FT3 - 6.2 (3.5-6.5 pmol/L)

    FT4 - 18.2 (10.0-20.0 pmol/L)

    TSH - <0.01 (0.35-5.50 mU/L)

    TPOAb - >1000 (<35 IU/mL)

    Anti-TSH - 1.1 (0.0-0.04 U/L)

  • As far as I concerned, someone correct me if I am wrong, having both graves and hashi can make you have symptoms either hyper or hypo regardless levels as having both can sort block each other. Oh so hard to explain :( but basically in cellular level you could be very hypo but graves causes tests results look like yours.

    That's what I have read why managing both might be so hard.

  • I agree this was me.

  • I was thinking that too as i do have symptoms from both. Have you read of a way round it or if there is a test you can do to that shows that? I know that my doctor is gonna insist that it's just Graves based on these blood tests.

  • Unfortunately it was just an article about why managing thyroid issues seems to be Hebrew to most doctors as they have no clue. There was very little detailed information about treatment except that the doctor should understand the difficulty of graves-hashi combo

    .

  • ok, thank you

  • Nikki, having both Hashi's and Graves, you really should ask to see an endo, because it's far too complicated for a GP to understand.

    But, Don't forget that hypo and Hyper symptoms over-lap. Palpitations, anxiety, weight-gain can be either hypo or hyper. Which makes it more complicated! :(

  • Hi Greygoose, I already see an endo...it was them that told me i had Subclinical Hyperthyroidism and did my last thyroid blood tests.

    My next endo app is on the 21st June so i'll mention it to them again too. every time i think i'm finally getting somewhere with it i end up going backwards :(

    I've heard about the block and replace therapy. with having symptoms of both or not knowing which of the two is causing it, could it be worth asking about it? I don't have to take any medication at the moment.

  • I have no first hand experience of it, but it might be Worth mentioning it. If you have symptoms, you do need something. However, at the moment, your FT3 is not over range, so I Don't know what they could do.

  • I'll mention it when i go. on my new blood test form they have only requested FT4 and TSH should i ask for another with FT3 on too?

    My endo did send a letter to my doctor saying to perscribe me 5mg of Carbimazole because of these symptoms but when i explained to my doctor what they were he said to wait for now as they could be something else not Hypothyroidism.

    I think sometimes they forget that during the wait you still have to deal with these symptoms.

  • Oh, goodness! Doctors always say that. They really, really can't bear to admit that any symptoms can be thyroid. I've no idea why. But, if your suffering, he should do something, and trying Carbimazole is as good as anything else, I should imagine. If it doesn't make you feel better, you can alway stop it. I Don't think they even realise that you have symptoms, never mind that you have to deal with them.

    I think if it were me, I would go back and say I wanted something done, and I wanted it now! If the endo said to take Carbimazole, does the GP think he knows better?

    Yes, do ask for an FT3, always ask for an FT3, it's the most important number. They might not do it, in their ignorance, but still best to ask.

  • If I was you I would start looking for healing my body .look at anything you are eating that can upset the autoimmune system. Stress or high cortisol. Lack of vitamins you may be able to heal yourself. Before it gets out of hand.

    I would still have some citamintest done.

    nutri adrenal do good supporting thyroid vitamins.

    also synthetic and bovine adrenal support.

    I would also get female hormones checked.

    they should have done mine but they dodnt test. Sometimes the drop in estrogen can cause graves.

    kate

  • I have been trying to look at what i'm eating as i have either IBS or something else that has similar symptoms to IBS that keeps coming and going. nothing confirmed yet but have an ultrasound on the 23rd May so hopefully that will confirm what that is. What seems to affect me one time doesn't necessarily the next time i have it so i'm struggling to find triggers.

    I did ask for a blood test to check my hormone levels as i'm always stressed and have a few symptoms that could be due to having high or low Progesterone/Estrogen or Cortisol but the form she game me was for hormones to help you get pregnant as we were talking about me trying AI once my levels were normal so i'll ask again when i go on the 2nd June.

    From tests i have had so far i have low levels of Vitamin D, Iron and Folic Acid which i'm taking supplements for at the moment but there could be others as my healthy eating has been up and down for years. Is there a way to check for all of them or do you have to do them individually?

  • Your gp surgery should be able to do all test yes altogether.

    if they won't bluehorizen medical a do.

    but because you are under endo your endo should do this. My last results were done with endo at hospital.

  • I'll ask when i go next month thank you.

  • This is exactly what happened to me and endeed up having the rai to get rid of thyroid. Biggest regret of my life. And I was fat not thin. However Marz directed me to a site on thyroid UK where is tell you about tsh and about the test. There is one where it shows tsh now now hypersymptons but your actually hypo. .

    hang on ill find it and get back to you. But I had hypo symptoms with graves new it wasn't right but did not know anything.

    kjc1tisdell

  • In tuk main page it is on the drop down menu Interpretation of thyroid test.

    in the first column it has supressed tsh. Then ther is an arrow under tertiary hypothyroidism then it point to the second column pouting to hypothyroidism. I think this was me as all family member are hypothyroid.

    I never fitted the hyperthyroid symptons unless the stress in the adrenal makes you fat.

    I went private but it was still with mgs and I would ask endo why I wasbfat and why I had pins and needles everywhere. His reply was 'I don't know'

    Just rubbish.

    Insist on getting right diagnosis there are a lot of people who regret having rai.

    Read and read again.

    good luck

    kate

  • Thank you i'll have a look.

    RAI and surgery have been mentioned to me several times over the last 12-13 years but my symptoms have always been mild and not really had to take much medication as my levels go high and low by themselves. That's what my endo thinks will be the most difficult thing to control as if i take meds when i don't need to i'm suppressing the gland more.

    I have read a lot of posts about having both and how a lot of them regretted having it done so both will be a last resort for me but i'm sick of the back and forth of the symptoms not matching the diagnoses.

    I just want it right so i can control it and stop having all these symptoms come and go.

    Nikki

  • Yes but the thing is even after the rai I still feel like this. Hasimoto is autoimmune I still get flare up after 8year after rai.

    I know how you feel so frustrating.

    kate

  • Hi Nikki,

    T3 is the active thyroid hormone which regulates the metabolism and therefore the symptoms. With a free T3 near the top of the range you should not have any hypothyroid symptoms.

    One possible cause of your continuing symptoms is thyroid hormone resistance, also known as impaired sensitivity to thyroid hormone.

    This is a genetic condition so if there are others in your family with fibromyalgia, chronic fatigue, depression or thyroid issues this would support this possibility.

    People with this condition need very high (often above range) levels of T3 to feel well. Doctors however have been known to diagnose this as hyperthyroid and the treatment reduces the body's T3 and makes the condition much worse. They may then prescribe levothyroxine which does not really help.

  • Hi Sandy,

    I'll look into that but as far as i know non of my family have had fibromyalgia, chronic fatigue, depression or thyroid problems...just me.

    I've had Graves for 12-13 years now and have not taken much medication during this time, mostly due to my Depression. In the last few years now i'm starting to take my meds more seriously i've still not had to really take anything as my levels go up and down by themselves which was why my previous doctor & consultant both told me it's probably burnt out. i've since read that your thyroid can't get burnt out and another consultant diagnosed me with Hashi.

    I've felt the way i have for so long i don't know if i am feeling unwell or "normal" the symptoms i've listed in my posts are ones i've noticed but can't tell if there really having any kind of impact on me. I've since found out that the muscle/joint pain could be due to low Magnesium levels so i'm wondering if these symptoms are due to low vitamin levels as i do have low Vit D, Folate & Iron which i haven't started taking my supplements for.

    Hypo & Hyper symptoms seem to cross so may other possibilities, it's hard to know if it's because of my thyroid or something else.

    With my T3 level should my metabolism be fast or slow. still struggling to work out why i'm either putting on weight or staying the same?

  • It seems to me that it is unlikely that you have Graves. With Graves T3 would be high and you would have a very fast heart rate, shaking hands, palpatations etc.

    Depression is associated with hypothyroid or Hashi and with it the T3 would be low. Since your T3 is near the top of the range you are not hypothyroid and that is why I suspect thyroid hormone resistance.

    Another good indicator is temperature - with Graves it would be normal or high - with hypo of thyroid hormone resistance is is likely to be low. A low heart rate and low blood pressure are also indicators.

    If there are no obvious signs in your family, such as fibromyalgia, chronic fatigue, depression or thyroid problems, there may be other less obvious signs such as people feeling cold, weight problems, swollen hands and ankles, puffy faces, wonen's problems etc.

  • I do have a fast heart rate, I also have the shaky hands, palpatations just not all the time. I also have insomnia and fatigue which is playing up at the moment.

    I had my Depression about 5 years before I got Graves. It was triggered by loosing my Nanna and some other problems I had at the time so that could maybe explain that. Last time I had my blood pressure checked it was normal. My face usually and body usually feel warm when I touch them but also feel cold. That's up and down too.

    As far as I know none of my family have had any of them symptoms.

    I'll look into it and see if I can get it tested which should be fun as my doctor and ends day it's Graves and Hashi. Thanks for the advice.

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