New here. Test results diagnose Hashi's. Any advice/comments greatly appreciated.

[flying_swallow]

Hi all,

I have been lurking and reading here since March but this is my first post. I will apologise in advance as it will probably be long and rambling (foggy brain), so thanks in advance if you manage to bear with me through it all.

Since a bout of laryngitis around 8 years ago when I lived abroad which I was prescribed hydrocortisone drops for, I had been feeling as though I needed more and more sleep to feel 'on top of my game' but put it down to the illness lingering / busy final years at uni etc.

Probably around 6 years ago, it started to get gradually worse to the point that I could easily sleep 10-12 hours a night and only felt relatively okay if I was in bed by 10pm and up by 8am (not sure why but I suppose it must have been optimum sleep and awake times!) I went to see my Doctor in 2007 to question this after falling into a completely deep sleep for 14 hours one night and he tested for thyroid and iron at that time. I tested as very slightly anaemic so was given iron tablets and told that some people just need more sleep than others. Nothing was mentioned about the thyroid so it must have been still in range at that point.

I went with this thought over the next few years and was really very lucky in that I never felt so ill that it kept me off work or caused any majorly dramatic problems. It was more the slight niggle that I wasn't exactly at my optimum and I only ever felt normal-ish if I kept to my bed early - up early routine. Any deviations such as bed at 12am and up at 10am would leave me feeling almost jetlagged and over-emotional. Looking back now with hindsight, I also always had an underlying sense of anxiety that I had learned to live with.

A couple of years ago, I also started to get what I now know to be the memory loss symptom. I'd walk into a room, have no idea what I'd come in to get, and have to retrace my steps to trigger my memory, or I'd be questioning whether I'd locked the front door etc. Again, I just put this down to tiredness / being busy at work. I thought it would sound a bit hypochondriac to go to a Doctor with it as everybody would make comments to me like 'Oh, it's just age."

It then so happened that I had to go and see about a constantly running nose in February and I saw a different Doctor to my usual one. He seemed so nice and was actually listening to what I was saying that I decided to have a go at describing the tiredness/memory loss. Not doing so well, I promptly burst into tears and was rather incomprehensible but he was great and got the gist of it so tested for iron and thyroid. 3 days later and he phoned with my first results, which were:

TSH mu/L (0.35-5.00) + >200 (200 was the lab's top range measurement)

Free T4 pmol/L (9.00-21.0) - <5.0

TPO U/ml (<6.0) + >2000.0

He started me on 50mcg Levothyroxine, and after 2 months of that, the results were:

TSH mu/L (0.35-5.00) 99.0

Free T4 pmol/L (9.00-21.0) 9.6

I then got put up to 100mcg Levothyroxine and he said he would also request tests for B12, Cholesterol and Ferritin the next time as I still had the jetlagged feeling. From reading about others' bad Doctor experiences on here, I was so pleased to have found him as he seemed genuinely interested in listening to the symptoms and investigating different avenues. He was even curious about what info I had found on here rather than dismissive, as many seem to be. As it was early days, I hadn't pushed him on anything like T3 yet, but I got the feeling that he would at least be receptive if I had tried.

That's now been 2 months on 100mcg Levo so I went back to do my next blood tests at the beginning of the week. Whilst waiting, I saw a notice on the wall that my nice Doctor is "on sick leave for the foreseeable future" ! I asked the receptionist and she said that I will probably see the female Doctor at the surgery. I have been to her a couple of times before, though just for a repeat prescription of the pill, nothing thyroid related. The 1st time, she told me I was far too skinny for someone in their 20s and put me on the scales. The 2nd time, she was desperate to get me off the pill. I may be misjudging her, but I am a bit apprehensive now as she seems a bit militant.

My appointment is tomorrow evening and I am due the next TSH/T4 results, as well as the cholesterol, B12 and Ferritin that my nice Doctor had requested. I was feeling very slightly better on 100mcg at first but it seems to have regressed in the past 2 weeks and I am again fuzzy and tearful at times so I probably won't be at my most clear with this other Doctor. I think I have the TSH/T4 thing understood enough to stand my ground if required in any way but could somebody possibly tell me ranges/what I should be looking for with cholesterol, B12 and ferritin? I want to make sure as best I can that if I need any supplements, I can interpret the results and argue the case if necessary. I could be reading her wrong from my previous appointments with her but she seems to want to take people off meds, not give more out!

Thank you if you have managed to read through my monologue and get to this point. I have meant to post before but it's unfortunately all just come out in one big jumble. Also, thank you in advance for any comments or advice that you can give. It is much appreciated.

[Pink_Bear]

Hi Flying Swallow

Welcome to this great website - for certain joining it is a very positive move. People on here are so helpful and knowledgable. I am about 3 years ahead of you with a diagnosis of Hashi and I can relate to everything you've written.

Can I first of all suggest that you look at Dr Alexander Haskell's website Hope for Hashimoto's? There is a set of presentations there that give a good clear explanation of the condition. I found it really helpful in understanding the progress as you up your dose of levo and why sometimes you seem to crash. You have to be patient as it can take a long time - it was about 2 years before I seemed to get on to the optimum dose.

I'm afraid I can't answer your specific queries about B12 etc as my tests were all OK. But I was defcient in vitamin D and starting a supplement this time last year made a big difference to me. It was only when I got that sorted out that the anxiety really seemed to ease and my sleep became more "normal". So at the very least I think you should ask for the vitamin D test.

Don't hesitate to get in touch if you have other questions. Good luck for the appointment and let us know how it goes.

Mary

[greygoose]

Hi Flying Swallow, welcome to the group.

High cholesterol is a symptom of low thyroid hormone. So yours will possibly be high. That's ok! Whatever you do, don't let her put you on statins! Statins are dangerous and the cholesterol - which we need anyway - will come down as your thyroid hormones increase. It is not a problem.

For Ferretin and B12, I can't give you exact figures, but don't accept the old 'well, it's low but it's in range, so that's ok'. It isn't OK. They need to be up near the top of the range for your body to be able to use the thyroid hormone you're taking. And with B12, the sky's the limit because you can't over-dose on it. If she won't give you suppliments, you can suppliment yourself. Methylcobalamin (B12), you can buy it on Amazon.

You will probably need an increase in your levo, your FT4 might be low, but your TSH might be low as well. The FT4 is the one she should be looking at for dosing - it needs to be up the top of the range - not the TSH, that is irrelevent.

One very important point: always ask for a print-out of your results. It is your legal right to have them. Keep your own records so that you know exactly what's going on and they can't pull the wool over your eyes as they so love to do! If you have problems understanding your results, post them here and someone will help you.

Lots of luck, Grey

[flying_swallow]

Hi Mary / Grey,

Thanks for your replies. I've already had the surgery receptionist phone today and say she had my bloods back and they indicate that I have low ferritin so have to pick up a prescription. Weirdly, no mention of thyroid test results but I have my Doc appointment today so I'll see what she says to it. Am I right in thinking that any iron tablets need to be taken apart from Levo? Following advice from this site I'm taking my Levo at night so could do iron in the morning if so.

Thanks for the advice about the Vitamin D. I forgot to ask my Doctor about that the last time. I didn't realise it could affect anxiety in particular. It's crazy how such a small part of your body can wreak such havoc. Sometimes I think it would be easier to have a broken bone etc as it's something that people can physically see. The forgetfulness is the worst one for people to accept, I find. Hoping I can make a breakthrough with that as it seems to be my worst symptom.

Thanks again for the replies. Am on way to Doc appt as I'm writing so I'll update later if there's anything 'exciting'!

[Heloise]

Militant? I believe you and it's terrible. Be sure to impress to her that you understand that T4 will suppress Thyroid Stimulating thyroid (TSH) whether you are benefiting from thyroxine or not. If you are not feeling better you obviously are not getting all the benefits from the dose you are using. Within a week or two, you can tell whether it is sufficient. Insist on an increase if you feel you need it and the TSH is even within range. If you feel ill, tell her you would like to stay in range but at the low end since there is room for it.

It is such a struggle with this disease and there is no reason for it. It is certainly not more costly than diabetes to the NHS, is it?

[flying_swallow]

Well, in a nice surprise, my new doctor turned out to be pretty good with it all. She had also suffered thyroid problems so was very understanding. Will hold my hands up and say that I misjudged her from previous encounters. (Must just be the pill she's not keen on!) Reading others' experiences on here, I know that there seem to be some horrors out there so I have to give credit where it's due to both docs I've seen so far. I'm counting myself very lucky as I don't think I'd have coped so well with some of the experiences others have had. As you say Heloise, the cost thing seems to be such a big factor and I don't know if there's much we could have done to prevent getting it. Pretty frustrating when you see how much money goes on things like drink related incidents & the ensuing fallout, but I suppose that is a whole other can of worms.

My results have come back as TSH of 17.9 and FT4 11.6 (same lab ranges as above after 2 months on 100mcg). I've been given 100mcg and 25mcg pills and have been told that I can alternate 125mcg and 150mcg and then move up to 150mcg every day if I feel I can handle tha, then I've to go back in 2 months for the next bloods.

Did anybody else get palpitations when moving up a dose? I did when I went to 100mcg but rode it out & it went away after a week. Am not sure how to tell when it's just a reaction to a dose change or turning into hyperthyroidism as it all seems to be the same symptoms!

From Mary's advice above I'm also thinking of trying a Vit D supplement. Is there any particular dosage to go for? I forgot (grrr @ brain) to ask to be tested but would be interested in trying it to see how it goes.

Thanks again for all of your replies & advice. Think I've still got a lot of reading to do...