Hi there. I wondered if there is any advice or recommendations for seeing a private endocrinologist for my particular situation - is there any benefit?
My husband and I have been trying for a baby for nearly 4 years now. I went to my GP in March 2020, who did some tests and my husband went to his GP to provide a semen sample. My tests were all ok, his result came back as low sperm count, and my GP then referred us to Gynaecology (apparently the first step towards an IVF referral). We jumped through all of the hoops, made sure our diet & lifestyle were good, they tested my thyroid and it was 'borderline', and they said it would just be monitored. We finally got referred to IVF clinic in December 2020 and then started IVF (with ICSI) in August 2021 which resulted in a day 3 transfer of 1 embryo (nothing to freeze). Unfortunately it was unsuccessful, then we had to wait 4 months for a review appointment. It was only through the Fertility Network forum that I learned a little more about the thyroid function and how it can affect fertility.
I asked my IVF consultant what my levels (TSH) were during my treatment cycle and it turns out they hadn't checked it! They like it to be under 4, and mine was almost 7. I got it re-tested in November and again it was still almost 7, so they put me on 25mcg Levothyroxine.
I started downregulation for my 2nd IVF cycle at the end of January and took it upon myself to have my GP test it again, just to make sure the tablets were doing their job. As it turns out, my level has gone up slightly, so they have now upped my dose to 100mcg. Unfortunately, this means that I have had to delay moving onto the next stage of IVF (stimulation injections) and they are going to re-test in 2 weeks to see if my TSH has come down any.
I just feel so angry that this test was overlooked for my first cycle and it has wasted one of our chances. I could have been put on these tablets months ago, but they didn't bother to check.
Also, I actually have no idea what all of these numbers and results even mean. I feel fine health wise so to find out after 2 years of GP and hospital visits and numerous blood tests that my hormones aren't right for conception I just don't know where to turn for good advice and explanations.
If someone has a link to private endocrinologists who may be able to help me I'd be very grateful. x
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Camkid12
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No range, only got a letter from gynae so will request print out of results
10/12/20 - bloods at GP
Verbally confirmed ‘ok’. Will request print out
5/11/21 - TSH was 6.02 (0.27-4.2)
Free thyroxine 15 (11-22)
22/11/21 - Started 25mg levothyroxine
31/01/22 - TSH was 6.89 (0.27-4.2)
Free thyroxine 15 (12-22)
16/2/22 - Started 50mcg levothyroxine
Bloods to be checked again at GP on 28/02/22
I’ve been taking 1 x folic acid (400ug) with vit D (10ug) and 1 x ubiquinol 100mg daily for about 1 year. Always in the morning on an empty stomach, and when I started levothyroxine I just took it at the same time as these 2 supplements.
When I get my bloods done on 28th I will ask if they can do the full thyroid tests that you mentioned.
You absolutely must take levothyroxine on its own, never with any other supplements or medications
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Strongly recommend getting FULL Thyroid and vitamin testing done 6-8 weeks after starting to take levothyroxine correctly
You could test vitamin D now
Test twice yearly via NHS private testing service when supplementing
Thanks for such a quick reply all of the info! Gives me an excellent starting point to move forward from. I made a mistake, it’s actually only gone from 25 to 50. I was reading the info leaflet in the box last night and it said the usual starting dose is 100, so I’m not sure why they started me on 25 in the first place?
What is the chance of my tsh going from 7 to less than 2.5 in the space of two weeks? I can’t help but think I’m wasting my time staying on the buserelin nasal spray as surely I’ll have to cancel the cycle anyways until this issue is properly settled 😔
Essential to test vitamin levels as very common to be low when hypothyroid, have these been tested recently
TSH changes slowly, hence waiting 6-8 weeks to retest
More importantly any baby relies totally on your thyroid hormones until at least 3 month gestation so you must have good levels of Ft4 and Ft3. Have you had Ft4 or Ft3 levels tested
Welcome to the forum. Fantastic info from SlowDragon - lots if it, but good! I had a pile of info provided when I joined - started my road to recovery.
You say you have been feeling ok - I guess have been diagnosed earlier than most - many are ill for years with lots of nonspecific things that only a decade or so later when finally diagnosed make sense. Like me 😊
Doctors rarely seem to understand thyroid issues- you only realise this when you start to educate yourself and scarily it does not take that long to overtake their knowledge - there are rare anomalies but I’ve yet o meet one. Read round and get genned up. Look at NHS guidelines for hypothyroidism too. However, Do Not rely entirely on NHS as the info provided only backs up their decision making on treatment.
There are a few useful bits in it about keeping patient on same brand if patient wants (we recommend to reduce the variables) and acknowledgement that your size may come into dosing.
TSH is not the gold standard for checking and monitoring thyroid function - driven by financial considerations NOT clinical excellence.
Read a book, read some lived experience read some scientific papers (if like me several times over and over - Chuck mud against a wall long enough and eventually some sticks!)
You are going to have to advocate for yourself to ensure you get the correct treatment. Read my profile as an example of lived experience to get started. I came to the forum very ill and the advice they gave me saved my life. Literally,
I get private blood tests with all the thyroid markers to monitor my health. I’m gluten-free and feeling well.
NHS blood test is like the TV show ‘catch phrase’
“So folks we have revealed the top left square (TSH) and (if you are lucky FT4) the bottom right square- have a guess what’s behind the other squares - frankly we haven’t a clue, but the blood test is cheap! Hurrah”
I hear you Camkid12! I’ve been on a very long journey with the same thing. It’s an absolute shambles. I have had to battle my way through being mis-diagnosed and under-medicated. We’ve been trying for a baby for a few years and I feel it would have worked had my problem been caught earlier and treated. I’ve just started IVF. I waited 8 months to see an endo on the NHS, turned up to the appointment and I didn’t even get to see a specialist! He was sat in another room! I wasted so much time and if I could go back I would 100% go private straight away. Infertility is so stressful and time is precious so that would be my advise.
Oh and like someone else said, don’t take your thyroxine on the day of your blood test! No one told me that but it really does make a difference to the reading. Good luck x
Thanks for the info 😊 I had bloods done on Monday and got the results on Friday. TSH now sitting at 9.91. I can’t believe it - it’s just getting higher and higher despite being medicated. I’ve ordered private blood tests but was advised to hold off until after the Easter weekend as they couldn’t guarantee they would be able to do the lab testing in the correct timescale 🙄 did you manage to get your thyroid under control eventually?x
I’m so sorry to hear that, I know your frustration! My levels had been around 2 which was great but I realised I had been taking my medication before having my blood tests so this last time I had a blood test first thing in the morning and my TSH was 3.9 so I can only assume that the whole time it has been fluctuating outside the optimal range of 2.5 needed for fertility/IVF. Have you had your antibodies checked? Mine are over 1000. I have Hashimotos disease.
I have heard that it’s a bit more difficult to control the levels with the autoimmune condition. At one point my level was 42…
You can help things with diet and supplements, there is a great Facebook group with people who have years experience living with the Hypothyroidism. I would recommend joining it - Hashimotos the alternative approach (uk group).
Ultimately though it really sounds like you need a good specialist who can sort you out ASAP. If you find one please let me know! X
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Private Endocrinologist?
1st endocrinologist appointment. What should I ask for? 
Private Endocrinologist
Little long - TSH swinging up and down, Dr says 'wait and see' but we need IVF!
