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[Peroxideblader]

Hello I think I've asked this before but as I'm so dizzy and brain mashed I'm not sure...
I am convinced and both blood tests and thyroid association agree that I have secondary hypothyroidism..sadly with the doctors as only one level was below their range they class me as normal!! this is common with the nhs doctors and I've now given up as 3 different doctors all dismiss me as just being perimenopausal and that's that!! I know a lot of the list of menopausal symptoms are similar but blood tests differ.
has anyone been in the same boat and battled to be believed and be diagnosed with thyroid problems and not just perimenopause  thank you

[Peroxideblader]

anyone there . 

[dangermouse]

All I can suggest is to look up the Ray Peat forum where many treat their thyroid with Armour or similar, even if borderline blood anolmolies.

Also a lot of peri women on there, so you may find more targeted advice than here.

[SueLW]

I am on HRT, struggling to find any relief.  I am also hypothyroid, brought on during perimenopause.  No GP took it seriously even when my blood tests came back flagged by the lab as over range.  The NHS is currently bonkers regarding thyroid.  Your TSH has to be over 10 before they will treat you unless you find a sympathetic GP.  In the US you would be treated with a TSH over 3.

Do you have a print out of your last blood test to include the results and the reference ranges from the lab?  If so, pop them up here.

[Peroxideblader]

thank you..I've been ill for 6 years and a lot could be perimenopause but my results for thyroid show a problem.
my tsh and t3 are low and my t4 is below range plus I have very low ferritin and folate.  I feel dizzy weak blurred vision tummy aches and as I've posted before on here I cannot get to sleep til 4am every night. 4 family members are hypothyroid  but mine points to hypopitituarisn.
how did you get diagnosed in the end 😊

[SueLW]

If you have low Free T4 and low Free T3 but a low TSH there is definitely something wrong.  What did your doctor say?  Did he not see a problem at all?  Can you go back to the surgery and see a different doctor and state what you have just told me below?

I finally got some treatment from my private HRT doctor.  I have the opposite problem really.  My TSH had gone up but my Free T's didn't drop, they weren't good, but they were not at the bottom of the ranges.  The treatment is slowly bringing the TSH down but the Free T's haven't moved!  I need my T3 higher.  My private doctor has written to my GP telling them what I'm on so that they will pick up the prescription, which they have done.  But it's not been plain sailing.  Having started me on thyroid hormones the private doctor was way too slow at raising my doses and that seems to have made things worse.  It's been 6 years for me too.

Your description below means you must raise your ferritin and folate levels and probably your B12 before you start any thyroid meds.  Your body won't cope with them with low iron and B12.  The symptoms you describe could just as easily be B12 deficiency as thyroid or menopause.  Has that been tested?  Do you have the result?

Have you found this patient forum?  https://healthunlocked.com, there's a thyroid group there.  The patient experience and knowledge is vast and very helpful.  I suggest you go over there and register and start asking questions and for advise.  You will need some actual test results, but it's probably going to be better for you if you get your own private tests done and again, the people on the forum can advise what you need and tell you which ones to use.  You most definitely need to raise your iron and test your B12 though.  There's a woman over there called SeasideSusie who is very good on what supplements to take and how to raise iron.

Not sleeping until 4am means your cortisol is dysregulated.  That will need looking at too.

[Peroxideblader]

thanks so much for your kind reply...the thyroid site you mentioned is the one that told me my thyroud is definitely at fault and suggested secondary hypothyroidism with all 3 levels being low.
my b12 was OK but I did self supplement for 4 months but stopped 3 months before my blood test and before I supplemented it was 212 all ok according to the gp of course. 
I have seen 3 different doctors all said as 2 blood tests were just in range I was on snd they wouldn't refer me to an endocrinologist as in their eyes I don't have a thyroid problem!!
they said it's menopause depression being a hypochondriac and health anxiety..2 doctors actually laughed and said just get on with life stop reading rubbish on Dr Google and making illnesses up...this is no life at 49 it's awful yet I can't get help 😣

[AgathaC]

Hello peroxide blader, you are 49 and have been unwell for 6 years since you were 43. My symptoms started then too and I went to my GP. Thyroid was something I mentioned but was told my blood tests were all normal apart from Vitamin D and Iron. I sometimes still wonder if I have a thyroid problem but I'm too nervous to ask again! I'm definitely perimenopausal and I can empathise with feeling like I have no life sometimes. It's horrible being told you are a hypochondriac/have health anxiety (actually they are two distinct things in my opinion) and to stop making things up. When I tentatively suggested menopause my doctor said they had no time for the menopause. You obviously need some help. I can't help you practically but I can send empathy and lots of love over the ether!

[Peroxideblader]

AgathaC thank you so much that's so lovely of you. I am a bright smiley person and still try to be on the face of it as I know people don't want to see you miserable or hear your woes. but inside I'm a tearful mess...I never thought thyroud until my 2 cousins who I hadn't spoken to for years got in touch when I had a really bad time 5 years ago and said alot sounded like their health issues before they were diagnosed under active thyroid..they spent over 8 years getting ignored and ended up going private which is what I think I'll have to do.
it's not like I'm not researched and looked into everything that I think causes this severe insomnia it's actually an illness DSPD delayed sleep phase disorder where you circadian rhythm is faulty and you aren't tired til day break..it's a disability in America and many other places but good old nhs think you're making it up.
I joined this site when I kept being convinced it's not thyroid it's menopause and it's been so informative. the only reason I haven't started hrt is due to the last 2 private blood tests I had done all poin ting to hypothyroidism.
I'm taking my partner for one last ditch attempt appointment with my gp in 3 weeks . my partner doesn't really sympathise I don't blame him as I'm now an exhausted run down unhealthy mess and I think he thinks I'm making stuff up. I'm hoping if he comes with me he can at least vouch for many of the daily health issue I have ( most of them I hide from him though so he doesn't think I'm a hypochondriac too)
I am so sorry you've had a tough time too but if you think you have thyroid problems you must push it because it causes furring of the arteries high cholesterol and heart attacks plus much more. keep me posted and thanks again sorry to ramble on and on

[SueLW]

Good for you for going back.  If your partner doesn't believe you though, is he the right person to take with you?  How about one of the cousins who has direct experience?

If you get nowhere, I think it's time you found a private hormone doctor and went to see them.  They should trial you on something at least.  It won't get better on it's own.  GP's can be less than useless to middle-aged women.  It's like we are irrelevant now.  I hate that. 

[Sunnydays]

Interesting reading this thread. I've posted over past couple of years about thyroid. Apparently mine is subclonocal hypothyroidism. My TSH is higher but the others ok. It keeps sipping just within and then at the next blood test it's over!
I saw a private gp who said she'd consider prescribing thyroxin and when I saw my own gp he wasn't keen! I asked to see endocrinologist privately and he has referred me. He also took blood test for thyroid antibodies and this result has come back positive. I'll let you know what the endocrinologist says. I expect he'll want blood tests too! By the way both my mum and sister had/have thyroxin for inderactive thyroid.

[Peroxideblader]

SueLW...I am taking my partner because I want him to see how dismissive and patronising the doctors are plus although he doesn't think I've got many health issues he can confirm to my gp the ones he sees everyday. my cousins don't live near me plus they've fallen out with me for taking years through the nhs and getting nowhere as they have private insurance and told me to give up nhs and go private.
Sunnydays yes please let me know how you get on. all my levels are low which is the rare type of secondary hypothyroidism which doctors know zero about as it's a fault with my pitituary not thyroud gland .
I asked to be referred to an endocrinologist but gp said I can't as not all levels are below range..they'd wait til you were rushed into hospital before they'd take action !!!!"

[SueLW]

Subclinical hypothyroidism should be checked out for both you Sunnydays and you Peroxideblader.  If there is a pituitary problem it needs to be discovered in case it can be solved or in case it's causing other issues by lack of signalling.  Whatever the outcome, both of you should be given a trial of Levothyroxine, the treatment is the same whatever the type of hypothyroidism.  In your case Sunnydays, your antibodies mean you have an autoimmune thyroid condition (Hashimoto's thyroiditis - but NHS just call it autoimmune).  Again the treatment is the same, Levothyroxine, but the aim to to keep the TSH very low, well below 1, to try to keep the antibodies low.  Peroxideblader, you need your antibodies testing, both kinds.  Good luck at the doctor appointment.  I understand why you are taking your partner now.  Sometimes just having a second person in the room makes the GP sit up and take a bit more notice.  If you can, get a plan together with your partner before the appointment.  If the outcome is a referral then the plan is to ask for that and give your reasons.  If the outcome you want is a trial of Levo. then both of you should put your heads together and work out what you are going to say to get that result.

[Peroxideblader]

I had my antibodies test they showed a positive but very low..mine all points to hypopituitarism so I need to see an endocrinologist and an mri as when the pitituary is at fault it can be a tumour on the pitituary gland they're almost always non cancerous. I can't be trialed on levothyroxine I've asked already because unless they agree I've got a problem they won't prescribe it and I haven't got a problem God knows how everyone else thinks I have bar them!! it has been suggested to try my own NDT  if I get nowhere. the only problem is my partner is someone who thinks doctor knows best so if they still say it's all in my head and it's nothing or its just my age then he'll agree with them and I will have no support. 😣