TSH levels - and no help from clinic

[Rubylou01]

Hi all - I really am a bit stuck and not sure how to proceed and would really appreciate some advice. I undertook a blood test in July with Hertility to check testosterone, AMH etc and was surprised to find my TSH was higher than expected: 2.79mIU/L. The Hertility Dr reviewing the results said I should speak to my GP as my TSH should be below 2.5mI/UL to get pregnant. I immediately emailed the results to the Clinic I am attending on Wednesday last week asking if I needed to cancel my long protocol (meant to start tomorrow) or could I proceed if they gave me medication to lower my TSH. And would it work fairly quickly?

No reply. So chased up on Friday. Clinic v apologetic, said someone would get back to me asap. Today nothing again. I also emailed my GP on Friday asking if they could help and they refused stating that as I had paid for this privately the resolution was a private matter as well (about as useful as I expected to be honest).

I guess I am really keen to hear others experiences of slightly elevated TSH. Did you have to stop treatment until resolved? How long was it until your TSH back within normal levels and how much were you prescribed to achieve that? Am I a bit panicked for no reason?

And if anyone has any advice on how I ask the clinic to respond to me after 2 failed attempts I'd be most grateful!!

Many thanks xx

[Memacha]

my clinic only cared if the tsh was above 4. With my successful pregnancy my tsh was over 3 and completely untreated. They’ve told me they only need to see it under 2.5 if you’re on thyroid medication. Trying for a sibling my tsh did get over 4 so the clinic wrote a referral to the GP who prescribed medication. I think it was about 6 weeks to drop. They check how you’re reacting to the meds and adjust dose if needed.

[Rubylou01 in reply to Memacha]

Thank you for replying Memacha - I think if be a bit more relaxed about it if the Hertility Dr hadn't specifically said it needed to be lowered. And ofc being 44 with lower chances anyway am really wanting to make sure everything that can be is bang on...

[orangecatmum]

I'm so sorry to hear you are having a difficult time!

My experience was a bit different as I first discovered my TSH was too high long before I started IVF but I had a similar battle: I did the thyroid test via Medichecks, and then went to my GP to ask for medication. Mine was over 4.5 at the time - and it took a lot (a lot!) of begging and reasoning on my part to get the medication. But not because I'd gone private: because they didn't think the TSH was an issue. I eventually got put on a low dose of levothyroxine, and my level dropped really quickly.

Over the past year my levels have risen again and I've had to get a higher dose - thankfully one GP at my clinic really got it and pushed for me to get a higher dose. Then when I was starting IVF I paid a private endocrinologist to help manage my TSH - he makes the recommendations and I send his guidance to my GP who then alter my prescription.

Your GP should help you regardless of where you got your test done. I've never heard of that 'private' rule. My main thing is, NHS GPs are really far behind the research and evidence about thyroid/fertility, but if you are persistent they should budge.

Is this something your clinic could maybe help you with, too?

Your level isn't too high and levothyroxine is really efficient, so I don't think it'd be a problem if you got your dosage soon!

Wishing you the best of luck with it all, I know how exhausting it is advocating for yourself 🤞🏼

[Rubylou01 in reply to orangecatmum]

Thanks so much for replying - this is v helpful. I just wish I had a helpful GP too ! but they seem to delight in saying its nae their problem (am in Scotland so dont know if that makes a difference). I've just emailed my clinic again a bit despairingly and asked what I need to do to be able to get a response as to whether fine to start long protocol tomorrow. I suspect am just shy of appearing to start to lose my temper with them; I signed with my full name! That'll teach 'em! Ive also just messaged an online pharmacy to see if they can help me on the basis of my results and the Hertility drs recommendations if my clinic leaves me stewing again as, if my TSH starting from a lower base and behaves like yours and goes down quickly, I don't think there should be a problem with starting the long protocol meds tomorrow...I am pretty sure my fertility Dr could issue a prescription to lower but maybe I should also start scanning for an Endo as well. Sorry to ask more questions but did you have to take more blood tests before your Endocrinologist would treat you or did they accept your medichecks results? And will they treat remotely ?!? Thank you!! Xx

[orangecatmum]

Sorry it's been such a pain for you! Lol, love the full name threat - you gotta do what you gotta do!

So my thyroid situ started last year and since finally going on medication my GP has tested me a few times (they have to once you are on meds) but after my egg collection earlier this year I felt quite off, so did another Medichecks to see how I was before going into my FET round. My TSH had gone up back to over 4 despite being on an increased dose of levo - IVF drugs and hormones can really mess with your TSH (could be why yours is slightly over now?) I will say I don't think yours is a really bad level so it may not even need addressing - but ofc if you do, I get that.

The private doctor was fine with my Medichecks test - I have also had a few private bloods taken since seeing him. I could have them done through my GP but my area has had a cyberattack and all NHS blood tests are cancelled! So I've had to pay a fair bit for these, vv annoying.

Bottom line is - you are about to go through one of the most intense physical things of your life and it's understandable you want everything to be just right. Your TSH isn't too bad but it's still maybe worth you pushing - I believe it's right to want to dot all the i's and cross the t's in this process.

I would write a firmly worded letter to your GP explaining the research (send links too, to help, from the British Thyroid Foundation and TSH) and your Hertility doctor's guidance, and be emotional but firm if you need to. This is so important to you and IVF hormones can really mess with your body so you just want to be one step ahead of the game. Xx

[Rubylou01 in reply to orangecatmum]

Thank you so much really appreciate this xx

[Tamaa]

Your GP surgery is doing a huge mistake. You are their patient. And you have found out a health related issue that needs treatment. It should absolutely not be private. I agree with the above.. write them a firmly worded letter and send research links. It's their duty to attend to this. I had my TFTs done at the private clinic, TSH wa 3, clinic sent letter to go who happily prescribed levothyroxine. I was asked to take them for 3 months at least, test again and then try out treatment (IVF). Good luck

[Rubylou01 in reply to Tamaa]

Hi Tamaa - thank you for your reply. I will try with a letter to my GP but unfortunately they've either got a bee in their bonnet about me or about my attempted fertility activities over the past 5 years (when I discovered I had rock bottom testosterone and told them they said they didn't believe private blood tests were accurate and if my nhs fertility clinic didn't think it was a problem or needed testing they weren't worried, my second appeal when I had bright red blood at day 19 of my cycle was met with: youre probably peri-menopausal - despite the fact I have had polyps removed in the past...so this is just the third incident). Am just thankful I don't have anything life threatening. Am going to try my fertility clinic again this morning as I need to know whether to start injecting myself ...and if the advice is to wait until its optimal then would rather not waste all that angst that giving myself the injection causes unnecessarily xx