How long does it take to correctly medicate? (Hashimoto's and IVF)

[bumbling]

Hi all

I was diagnosed with hypothyroidism about 10 months ago and it's taken a lot of campaigning on my part to get the GP to increase my Levothyroxine from 25mcg up to the 100mcg I've now been on since November. I still feel terrible / unable to work / hair falling out etc. I'm also meant to be starting IVF (at a clinic specialising in auto-immune issues) but they won't start til we've got my TSH well under 2. I'm now 39 so I want to sort it quickly…

My last thyroid test (done privately at my IVF clinic) in December showed my TSH to be 15.15 (reference range 0.27-4.20) and my Free T4 to be 17.5 (12-22). T3 wasn't tested. My antibodies results were thyroid peroxidase 811 (<50) and anti-thyroid globulin 178 (<100). They told me to go to my GP and get my Levothyroxine dose increased.

My GP said he can't possibly increase my dose again yet as we increased it in August, October and November, so he won't re-test me until at least March. (I also asked whether the antibody tests mean I have Hashimoto's and he had to look up Hashimoto's on wikipedia, which concerned me.)

So I guess my question is: is he right - how fast is too fast when increasing the dosage? Or should I protest / change GP / ask the IVF clinic to prescribe me a higher dose privately?

Also, any insights you have on my test results would be welcome - I'm still getting my head around what it all means (especially re the anti-bodies - I've assumed these results mean I have Hashis - is that right?). Do those numbers suggest anything else re where the problem might lie / what meds I'd be best on etc?

Also, my TSH levels have steadily increased over the past 10 months, as my Levothyroxine dose has increased. Is this likely to be because the Hashi's is progressing, or might it be that Levothyroxine just isn't working for me?

Thanks and sorry so long-winded! Seems to help just writing it all down...

[greygoose]

Hi bumbling, I'm not a doctor, but I would say that testing after six weeks was average. I don't know what your doctor hopes to gain by leaving it til March. That's over-kill! His method of increased your dose does seem somewhat erratic, but without more information I can't see any reason for not testing you now and increasing if necessary. Obviously not an expert!

For the rest, your TSH is much too high and your T4 is too low, but those numbers alone aren't going to tell you anything else about why or how. And yes, you would seem to have Hashi's.

All I can say about treatment is that the best meds are the ones you feel best on. And when dealing with Hashi's, the best treatment is one that suppresses your TSH and stops the Hashi's swings.

Just how long all that is going to take is anyone's guess. We're all different and react differently to treatment. But I'm sure you will get there one day - hope it's soon!

Hugs, Grey

[bumbling]

Thanks, Grey - really appreciate your thoughts and comments. (It may be that my doctor felt bounced into increasing my dosage more quickly than he was comfortable with by my getting tests done at the IVF clinic, bringing him the results and asking for an increase, and that's why he's dug his heels in now. Not sure.) Good to know that six weeks is average. I'll have a think about my next move.

Thanks also for your comments on the Hashi's and TSH / T4 levels - much appreciated!

[greygoose in reply to bumbling]

You're welcome.

[nostoneunturned]

Were I you, at your age and wanting to have a baby by IVF, I think that I would be requesting referral to an endocrinologist skilled in managing hypothyroidism for someone aiming to have a baby via IVF. Your GP plainly does not understand that your TSH should have been declining to the point of suppression, not increasing, if he had the brains/experience to deal with your thyroid problems competently.

Added to all that, the very fact that he had to look up Wikipedia to decide if you had Hashimoto's would have had me heading for the door.

[nostoneunturned in reply to nostoneunturned]

If you need confidence bolstering to request referral to skilled endo then consider that another on Health Unlocked was under a consultant when pregnant and hypothyroid.

thyroiduk.healthunlocked.co...

[bumbling in reply to nostoneunturned]

Thank you! I did once ask about seeing an endocrinologist (not very assertively...) and he brushed me aside. But your answer has helped me to decide - I'm going to go to another doctor at the same practice tomorrow and request a referral to an endocrinologist. (I would change GPs but will be moving soonish and changing then anyway.) Thanks.

[helvella]

The MHRA - those people who regulate medicines in the UK - produced a report on levothyroxine about three weeks ago. That says:

Once diagnosed, patients normally start the estimated full or just below the full replacement dose immediately unless they are over 50, have severe hypothyroidism or have cardiac problems, in which case, the levothyroxine dose is gradually increased from an initial daily dose of 25 - 50 mcg levothyroxine. This is then increased by 25 – 50 mcg/day at 3-4 weekly intervals until a normal metabolic state is attained.

mhra.gov.uk/home/groups/pl-...

Yes - it says adjust every THREE TO FOUR WEEKS - not what you doctor appears to think, every three to four months.

Perhaps your doctor is able to read words formed into sentences... ?

The term Hashimoto's is sometimes restricted to people who had a goitre. But many doctors accept that there is no really difference to the autoimmune attack on the thyroid whether you go through having a goitre or not. Most often, elevated TPO antibodies is taken to mean you have autoimmune thyroid disease/disorder - and some people will call that Hashimoto's.

As we so often say, also make sure that you have been tested for vitamin D, vitamin B12, folates (I assume they have done that?) and iron/ferritin.

Rod

[adoc in reply to helvella]

Hi bumbling, I'm in a similar situation to yourself in that I have Hashimoto's and have been struggling to conceive for the last 18 months. I was only diagnosed a year ago when it was found my TSH was 23+ and T4 around the 6 mark. I was very unwell and had also unfortunately had a miscarriage. After a year of fighting my GP (I had to go private to an endo in order to get my own diagnosis confirmed, again, my GP had not heard of Hashimoto's, I had no goitre etc but antibodies 1,300+). Following this I demanded referral to an endocrinologist on the NHS in order to have my levels monitored and stabilised. The important thing you need to know is that your TSH must be below 2 in order to conceive. Almost at a suppressed level is best. Mine is now at 0.14 and my T4 is 15. I feel the best I have in a year, almost back to normal really! I am also undergoing fertility treatment, I'm starting clomid next month for 6 months, then IVF if unsuccessful, I'm 36 in April. I was just discharged from the hospital NHS endo on Friday on the advice keep on the 100mcg Levo (I fought my GP to go from 50 to 100 last August), TSH must remain suppressed and to immediately increase dosage by 25mcg if I do fall pregnant as a baby can't produce it's own thyroxine for the first 12 months and it's very important from a developmental perspective. You also need to see an endo regularly if you do fall pregnant. When I increased my dose last year, it only took 6 weeks for me to get my TSH below 2, which is where it needed to be. Everyone is different but 6 weeks is generally accepted as enough time for a change in dosage to take effect in my experience (and I've seen 5 endos now who all say the same!) You really need to ensure you are under the care of an endo on the basis you're trying to conceive as they will get you to where you need to be with your TSH. Sorry, this is a very long winded response but I've had a long fight/done a lot of research to get to where I am now and am now hoping to conceive. I hope you do too and I hope my response has helped! Good luck to you and keep us posted.. You will feel better soon and best wishes with the IVF. I know how consuming all this can be..x

[bumbling in reply to adoc]

Wow, I'm so sorry to hear what you've been through, and so glad to hear you're coming through the other side. That's all extremely useful information, plus you've given me hope Thank you so much. I will keep you posted. I'll also have all my fingers crossed for you. Right, I'm off to get referred to an endo x

[bumbling in reply to helvella]

This is extremely helpful Rod, thank you. I'm reading the report now and will take the relevant bits with me to the GP tomorrow. Thanks also for the info about Hashimoto's definition. No, I haven't been tested for any of those (not even folates) - I'd read on here that I should be but have been picking my battles with the GP (who seems to get annoyed when I ask to be tested for TSH levels, never mind anything else). I'm going to try a different doctor tomorrow, armed with the knowledge above, and try to get a) an increase in my Levothyroxine dose b) vit D, B12, folates and iron/ferritin tests and c) a referral to an endocrinologist. Thank you.