Hi all, I could cry. I am crying now to be honest.
If things can go wrong for me they do. I had blood tests at the end of Feb maybe and at the time when I had my consultation/ medical review in March I was told I was 'over medicated' with Levo and they threatened to pull my prescription completely. I told them I had never felt so good, and was keen to start ivf and I was under the impression that my clinic wanted me to continue and if they wouldn't offer a prescription I would go back to them. I wasn't nasty about it. I was so worried about having any further blood tests in case my bloods came back too good that I stopped going. My clinic prescribed 25mg of Levo over a month ago. I was originally on 75mg and in March I thought "If I'm over medicated I will drop to 50mg". As the clinic prescribed 25mg I've been alternating between 25mg and 50mg daily.
Anyhow, I had my Endometrial scratch last week and was told this morning that again, my IVF has to be stopped as my blood test came back:
Abnormal high , TSH 10.75 mIU/L (should be <2.5)
Free thyroxine 15.1 pmol/l (normal between 12 and 22) – low normal.
Please can someone advise what is happening. When you have dates set for transfers and are ready to start treatment again etc it's devistating and I can't stop crying. I've been waiting an additional year and a half for this and it's been stopped again. Any advise would be appreciated.
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Hello. Don't panic. See your GP to discuss. I think we've chatted before, so you know I am also a GP. From looking at your results, it would suggest you ARE hypothyroid needing thyroxine, but at the moment not on enough levothyroxine. Your thryoid is working hard to make up the difference (hence the raised tsh... the hormone which makes your thyroid work harder). So, your thyroid working hard, PLUS your medication, means your overall free thyroxine is low normal (from how I understand it!) So, see your GP and they should put up your levothyrox dose. Many GPs will not know that for ivf purposes/trying to conceive, tsh <2.5 is recommended so you may have to explain that again... I would hope that in 4 to 6 weeks your tsh would be a lot better. Good luck xx
Coracle, I'm so sorry and so thankful. Thank you for your reply. We have spoken on quite a few occassions. If I jump it up to 75mg tonight when might my body be ready again? I know that's a stupid question as everyone is different.
I have my Endo scratches under sedation each time £600, put my body through a bleed and discomfort and try and get in the right positive mindset only to see the words 'abnormal' and not advised to go ahead. That's like 2 months work for me to pay for that for nothing. It's not really the money, but the 'prep' and then a stop... more time I feel I should be having with a 'little one' wasted.
I haven't started any IVF drugs/ patches etc. I was due to start them Mon with a view to having the transfer at the end of May. I've been alternating between 25mg - 50mg daily. At the end of March I believe I had a TSH of around 1. something. How can my TSH jump so high again? My GP doesn't want to know. I have the Levo sat here, I just don't know what to take as the GP won't advise and when the clinic suggested 25mg daily and gave me a presciption for that ... it's not good enough.
I'm so sad. I hate being and seeing that word 'Abnormal'. I always get so close and then it ends in failure. Sorry, on a real low at the moment.
Coracle, if I had 25mg of Levo around 12am the morning of my transfer how would that of affected my levels if at all please? I had no idea they were going to test, and they advised I take my meds before 6am as normal.
Hi, I actually was advised by my ivf clinic to take Levo in the evening as normal and my microgynon pill at 6am. I was going in for my 'Endo scratch under sedation' so they asked me not to eat after midnight or drink anything after 6am. I had no idea they were going to test my Thyroid Levels/ do bloods or I wouldn't have had any that evening. I was starting to feel good on 75mg, but when the GP suggested 'stopping' altogether and the clinic were sending a prescription for 25mg I thought to hop between 25mg and 50mg daily was a compromise. I was also worried I would run out of Levo altogether. It's probably all my fault but I'm feeling 'shattered' right now. I'm guessing ... having 25mg the night before my test wouldn't have left me with such high levels would it???? Thanks reallyfedup123
Does that mean you took your 25mcg the night before ur blood tests? Or was it 50mcg?
If you took thyroid meds within 24 hours of ur test they would artificially ELEVATE ur free t4 levels/decrease tsh (as t4 is storage hormone so hangs around in the blood for a day or so). The fact u took the meds and still have him tsh means u are def under medicated.
Oh, I see. I took 25mg the night before ... around 11:45pm ish. I have been alternating between the 50 and 25, but as the clinic sent a prescription for 25mg I panicked that if they tested, I would be to blame if my levels were wrong if I was 'taking too much'. Thanks for explaining that actually the 25mg would/ should have in fact lowered TSH if anything
Absolutely/ tell them you were alternating dose (I.e ur on higher than 25mcg overall and still high tsh!) that should make them
Sit up and take notice. Like I said a tsh above 10- is definitely hypothyroid whichever way u look at it- even with old guidelines they would treat above 10. Now the new ranges say u should treat tsh which is above 4!
How have u felt recently? Hypothyroid symptoms kicked back in? Your gP and clinic cannot ignore it anymore. U are not borderline - u are definitely hypothyroid. And they have wasted ur time. Turn that tear into a warcry! Lol
How have I felt recently. In all honesty 'Low' alternating between feeling cold (hands and feet) when I go out at the weekend, night sweats, borderline depressed/ low - especially today. However, I have shut myself away and stopped doing things/ not made any commitments as I wanted total 'rest and relaxation for the cycle - not knowing if I'd look like a puffer fish or friend of Nemo' on the steriods etc. I've told myself I'm just anxious poss with regards to the 'roller coaster' starting again. If it works it works, if it fails it's game over this time etc. I have had prob going to the bathroom again, feeling sluggish and just extreme fatigue. I have been 'bobbing' along trying to do odd days of work though so financially I can keep things ticking along and that way trying to 'look fwd'. I guess I've had dry skin on my forhead etc. It's the small things I guess. I've been so worried that if I went back to my GP for another blood test I would end up with no Levo. Hence me alternating between 25/ and 50mg. Trying to pack them away like a bloody squirrel hiding nuts, just in case. oh, gosh, what a headache. If it doesn't rain it pours. It hurts that my original TSH was 4.25 last year when it was stopped and now it's 10+ on some of the drugs a year later. No wonder my clinic won't go near me with a barge pole. x
Oh gosh music1- with tsh that high I’m surprised you can function at all. All of your symptoms tick hypothyroid- have u been taking all the vitamins also?. I wonder if your steroids are affecting it? Have u started steroids yet?
If I remember correctly you had high thyroid antibodies? Which suggests hashimotos autoimmune hypothyroidism. That means your body will attack thyroid gland gradually damaging it over time so it cannot make its own hormone... that is why people need an increase in their meds gradually.
It isn’t because of the meds that your tsh has got worse- it’s the DROP in ur meds (from 75mcg) that has allowed It to get High again. It was fine in March on 75mcg.
25/50mcg is just a very low starting dose. Won’t do much at all. I would think you probably need 100mcg plus to get it down to ivf levels but u need to increase it in 25 (max 50 steps every 4 weeks)
Don’t worry! Things happen for a reason and this may just be the kickstart to getting your life and health in order. If this really is your last ivf cycle then you want to give it your best shot. And finding this out now is far better.
You are not a freak. You are ill- not of your own doing and are among 1000s of women (and men) who have this condition. It is poorly understood and poorly managed- that is not your fault. But now you have some answers hopefully you’ll have the energy to demand proper treatment. Get the clinic to up your meds if you can’t wait for Gp. And then retest again x
Sob, I'm just being stupid. I didn't think lowering/ alternating between that dose would cause symptoms this bad. No, I'm not on steroids at the moment. I was due to start them on Monday, with rest of treatment. I do remember how different my mum looked on them bless her. Thanks so much for being there and listening/ advising. You and Coracle are amazing and I'm soooooooo greatful that I have you both in my life.... to listen to my rubbish Thank you from the bottom of my heart and if I could send you anything to get your BFP I would :)) x
You can PM me anytime if need be too. Unfortunately I learnt the heard way that I can’t just bury my head in the sand with his condition but there is light at end of tunnel. If you’re correctly medicated and vitamins optimal it is possible to feel well again!
Steroids should hopefully help with the antibodies too x
Im almost in the same boat as my tsh has shot up even though it was so low in January. And my dose wasn’t lowered!
I can’t believe ur Gp told u to come off the thyroxine altogether. A tsh of 10 is definitely hypothyroid! And if it’s that high whilst ur on thyroxine even more so it needs dealing with.
Your gP cannot argue with that.
I would increase ur dose as soon as possible- u could safely up by 25mcg urself anyway whilst waiting to see Gp. With a tsh that high I imagine you will need 75mcg at least in time but u need to increase ur meds slowly. If your tsh was 1.0 with 75mcg you could try again and test in 4-6 weeks.
I can imagine how heartbreaking it is for u but at least u have time before u start ur ivf. I’ve been hit with this bombshell after my embryo transfer ! So now I’m wondering if I’ve jeaordised it already.
Stay strong and you have every right to kick up a fuss now with GP.
Hey Saya, I just tried to write you a reply on your post but it wouldn't let me. I can't believe TSH has shot up so much, but the good news is... if you are pregnant or you get that BFP result they will def have to sit up, and monitor things and help your level come down. I remember when I had an apt with an Endo specialist at the hospital he asked if I was pregnant, and when I said 'no'. He didn't want to know. He almost implied that he wouldn't or couldn't do anything for me, even monitoring until I was pregnant. It's just a huge blow, more waiting, costs and time ticks on etc. Please try not to think too much about your blood results yet. I wouldn't want you to get stressed following transfer. Look after both of you (fingers crossed) look forward and try to eat well. I'm sorry your levels have gone up. Maybe that's due to it working shall we say I'm trying to send you every last positive vibe I have in my body. xx GP v clinic. Both bloody useless. Neither understand it, and just look at numbers and red ink that comes back on the test 'flagging up' that I'm abnormal and a freak xx
Aww thank U so much. Yes I almost have to relax because there isn’t much I can do. So will leave it to God at this stage.
However devastating your delay I do truly think it is best they found out now. Your levels can be normalised within 4-6 weeks with correct dosage and hopefully you can start ivf on the next cycle.
Endometrial scratch can sometimes be helpful even 1-2 cycles before treatment so don’t give up hope! Thyroid is far more important in ur case for ur own health and the baby ☺️ Stay strong
If your thyroid antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
So, my ivf was cancelled last week with the following email sent to me:
Abnormal high , TSH 10.75 mIU/L (should be <2.5)
Free thyroxine 15.1 pmol/l (normal between 12 and 22) – low normal.
I was advised to go to the GP, give them the results and get tests done so I could lower my levels. That was on Thursday maybe. Friday I got a GP apt with bloods taken.
Serum TSH level came back : 4.00miul/L normal
Serum Vitamin B12 level 239ng/L [150-900]
Serum Folate 6.5 ug/L [3.1-19.9]
Ferritin 75ng/mL [10.0-210.0]
Renal Tests ok (or at least not 'flagged up' everything else back within range except Liver Function Tests:
Serum GGT level 46iu/L [0/0-37.0] Above range
Serium total protein 83 g/L [60.0-80.0] Above range
Serum Albumin level 51 g/L [35.0-50.0] Borderline
Any idea what this could mean please?
I'm struggling to see how my TSH can jump from 10.75 to 4.00 in a week/ 8 days on the same level of Levothyroxine. I only changed my Levo amounts until after seeing GP with the clinic results.
When I googled Serum GGT it said something about 'alcohol and liver'. I don't understand. I've been Gluten Free for nearly a year, which sadly means abs no real ale, beer, or Gin. I don't drink wine. I'm still taking microgynon daily and now 75mg Levo. Totally confused. Many thanks in advance x
First test was around 8:30/8:45am at the clinic, second at the GP - around 10am.
Just wondering how it can be so different in the space of 8 days SlowDragon.
I just don't want ivf to take our money again and then cancel everything if my Hashimotos makes the TSH go up. In Jan it was around 1 and then hearing it jumped to 10.7 last week I was stunned. Today the GP said it can't have been - even though they have the printout. They said I am 'normal' at 4.00
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Also suggest you request list of recommended thyroid specialists if GP does not agree to dose increase if TSH remains high after next 6 week test
Recommendedto always get any thyroid test as early as possible in morning and fasting to get highest TSH. Don't take Levo in 24 hours prior to test, this gives lowest FT4 Take delayed Levo immediate after blood draw.
67.5 I have been taking 2 vitobiotics vitamin D tablets at breakfast. I doubled up as it was suggested 1 was not enough. Thanks so much for info above. It gives me more of a 'fighting chance with my GP - well actually they have been locums and you never see the same. They don't seem to know too much about vitamins, and thyroid, Hashimotos etc.
So, I just had a 'call back' from GP regarding my bloods. She couldn't wait to get off the phone. I would say she was on there for possibly a minute tops. She said "everything was fine". My kidney function was ....errrr and possibly I wasn't drinking enough water. I replied I drink a lot of water, and had done that morning as I didn't want to be told they couldn't find a vein.
She said my GGF levels and protein were due to alcohol and I should cut down. I just laughed at her and said "I have Hashimoto's since last June". I haven't had any alcohol at all.
She didn't have a reply. I could just hear her tapping away on the keyboard, probably writing "Hashimotos' and Gluten intollerant" in my notes. I mean, by now you would think they would be all over my notes anyhow. Enquiring on my TSH, she said "it's 4. You're fine, go back and tell your clinic you can start". I told her they needed it to be lower than 1 to start, and asked why it was 10.7 and jumped to 4. She said "I don't have answers for these labs".
End conclusion: Cut out alcohol, which I haven't drunk in a year, come back in 3 weeks time to see if my bloods were a 'blip'. What a waste of time. She it completely useless.
Thank you. I've been trying to hard to eat well. Complete GF for over a year, no alcohol at all, supplementing vitamins, veg and at least 1 fruit a day. Can't believe my levels have come back nearly 2 and a half times worse than they were when my first ivf was halted. Were you on ivf when you got pregnant or naturally? I mean it guess it doesn't matter. I'm just gutted they will never do the transfer with my levels so high. So pleased to hear of your pregnancy/s. I will take your advise seriously and do what it takes. I just need 'new blood' like a vampire Thank you x
I did AI, IVF, natural. (Husband had chemo). Wasn’t diagnosed hypo then but had a leaky gut. All you can do is be as kind to your system by feeding it as well as possible and allow it to do its thing. If only a blood transfusion would solve it.
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