Feel like I've hit a wall

[Emyloulou]

Hi Guy,

I'm still quite new to this as I was only diagnosed in Feb this year with a tsh of 147 😳 I have Hasimotos thyroiditis

Anyway since then I have been gradually getting better and am currently taking 150mcg levothyroxine and all the vitamins that you lovely people have recommended. All results for b12,Vit D,folate,iron etc are all now towards the top end of normal so no worries there and I have a fantastic GP who even though my last tsh was 1.1 and t4 towards the top end he increased my levo as I am still symptomatic. He too agrees that I should aim to be as close to the bottom of normal as possible, this was 3weeks ago.

My GP has requested my T3 be tested but the labs won't do it unless it's ordered by a consultant 😡 but as I have improved vastly on just T4 I'm not worried about not converting to be honest.

I've been totally gluten free for about 8 weeks now.

Over the last few weeks though I've really gone backwards, my feet and ankles are very swollen for which I've been given furosemide, still very overweight and can't lose it even though I'm trying, I'm so tired again, I could quite easily sleep all day (but as I work full time I don't!) I tingle all over, mouth and nose are numb, I ache every where, banging headache etc,etc..........

I've had the basic bloods done for lupus as I also have a photosensitive rash on my face and they where negative. All my most recent bloods have come back ok with the exception of my EGFR(kidney function) being just under 60 so I'm having that repeated on Tuesday and back to the GP Thursday. I swear if I go much more he will get a restraining order out!!!!! I'm very thankful that I have a good pro active, forward thinking GP who I can't fault for 1 minute after the trouble some people seem to have.

Any ideas? Is it normally to go backwards? I did have guillaine barre syndrome which is another rare autoimmune condition about 25 years ago so clearly my immune system doesn't like me

Thanks Emma x

[shaws]

You could have FT4 and FT3 done privately by home pin-prick tests by post. Just in case I will give you a link and these two labs are recommended one.

Medichecks and Blue Horizon.

thyroiduk.org.uk/tuk/testin...

[Emyloulou in reply to shaws]

I've looked into this but it's not really something I can afford at the minute and like I said I don't think I have a conversion problem as I have been improving vastly over the past months.

[shaws]

First I am glad you have such a good GP. Maybe you need some T3 (and I know at present doctors have been told not to prescribe) added to your T4.

You state your blood results have come back o.k. but if you can post them here, it will enable members to respond. Some tests we need to be at optimum.

Swelling is a clinical symptom of hypo and I'll give you a link of clinical symptoms.

thyroiduk.org.uk/tuk/about_...

Plus the following is a link from one of our Advisers to TUK who has now died.

web.archive.org/web/2010103...

Maybe your body cannot convert levo to sufficient T3). Levo (T4) is inactive and has to convert to sufficient T3 (the only Active Hormone) to enable our metabolism to work properly. I will point out that I am not medically qualified.

[Emyloulou in reply to shaws]

I don't have my print out unfortunately but they were definitely good, b12 was 700+ Vit D 100+ and all the others where in the top of the ranges. I'm still taking Vit D at the maintenance dose recommended on here and also selenium, magnesium, folic acid, ferrous fumerate (prescribed), k2, vit C,A and E, zinc and anything else that you have recommended at the dose and brands recommend.

It really bugs me when people tell me I'm so lucky I don't have to pay for prescriptions when it cost me more in supplements than it ever would in prescriptions 😡

I think I may have to just pay for the t3 test. If I ordered today do you think I'd get my results back for my Thursday appointment?

[shaws in reply to Emyloulou]

Some people make senseless remarks. Not paying for prescriptions is that it is because we have such a serious illness that if untreated we die a horrible long drawn-out death.

Would these people who make statements like that be willing to switch their place to yours. I should think not.

Just phone and enquire with whomever you want to test. They will probably send it out today and it is a Free T3 test not just T3.

To put your mind at rest a little, read on the following about FT3.

thyroiduk.org.uk/tuk/testin...

[Emyloulou in reply to shaws]

Thank you x

[Emyloulou in reply to shaws]

Sorry can I just ask, while I do have a great GP is there 1 company they will accept results from rather than the other? I've looked and Medicheck is cheaper than blue horizon at the minute x

[shaws in reply to Emyloulou]

Medichecks have a 'reduction' of some things every Thursday so are probably still posted. Both companies seem to have a good reputation.

Some doctors will not accept any outside blood test results, even if they wont be able to test them him/her self. Maybe you could check with your GP before ordering.

[Emyloulou in reply to shaws]

I think I'll ask him on Thursday first. I'm going to ask him to do all my female hormone type ones as well as I'm not sure if that could be the problem. Thanks for you help x

[shaws]

I shall also give you an explanation of swelling in myxedema (hypothyrodism) from Wikipedia:

Myxedema or myxoedema is a term used synonymously with severe hypothyroidism. However, the term is also used to describe a dermatological change that can occur in hypothyroidism and some forms of hyperthyroidism.

In this context, myxedema refers to deposition of mucopolysaccharides in the dermis, which results in swelling of the affected area. One manifestation of myxedema occurring in the lower limb is pretibial myxedema, a hallmark of Graves disease, an autoimmune form of hyperthyroidism. Myxedema can also occur in Hashimoto's thyroiditis and other long-standing forms of hypothyroidism.

The word myxedema originates from μύξα, taken from ancient Greek to convey 'mucus' or 'slimy substance', and ὁοίδημα for "swelling". It can also be thought as nonpitting edema, in contrast to pitting edema.

en.wikipedia.org/wiki/Myxedema

[humanbean]

Start keeping a record of how you feel on your Levothyroxine. Note the brand and the mix of pills you take. On 150mcg I'm guessing you take a 100mcg pill and a 50mcg pill?

Make sure that you never mix brands.

If you've taken brand A this month, then next month ask if your pharmacist can offer a different brand. If they can't offer an alternative get your prescription filled somewhere else. Phone round the different pharmacies, tell them what your prescription is, and ask what brands they would give you.

Some people are sensitive to the different brands and only do well on certain brands.

See info on the different brands here - there are four of them :

thyroiduk.org/tuk/treatment...

It is possible that you are allergic to one of the fillers in the brand you're currently on. It may be that you will feel the same on all of them, and you've got some other problem. But without testing carefully, you'll never know.

if you find one brand you do better with than the others make sure you get this fact on to your GP records and your pharmacy records. Also, make sure you get the brand you want before leaving the pharmacy counter. The pharmacist won't change them if you've walked away.

[Emyloulou in reply to humanbean]

That's a good point actually. I do take a 100mcg and a 50mcg and the 100 is a brand I haven't taken before. I used to work in the pharmacy that I get my prescriptions from so I'll speak to the chemist and ask him to swap them for me. Hopefully it something that simple

Thank you

[greygoose]

Do you know how Hashi's works? Have you researched your disease? Do you know that you should keep your TSH suppressed to stop the Hashi's swings? Whilst your immune system is still trying to destroy your thyroid, you are bound to have ups and downs.

Are you 100% gluten-free? Are you taking selenium? Both are measures people take to lower antibodies.

If you were still symptomatic when your FT4 was up the top of the range, then you more than likely aren't converting properly, Hashi's people often have conversion problems, and need T3 added to their levo.

[Emyloulou in reply to greygoose]

Hi, yes I've done a lot of research, my last tsh (3 weeks ago) was 1.1 but my GP increased my dose as he also agrees that it should be suppressed.

I've been totally gluten free for 8 weeks now despite people say "can't you just have a little bit" 🙄

I take selenium, magnesium, zinc, Vit A,C,D and E, folic acid, and ferrous fumerate all at the dosages recommended on this forum.

As I said I had improved dramatically over the last 6 months so obviously the t4 alone was doing the job. I now realise just how ill I was at the time and I'm amazed I never took a single day off work.

I'm going to take 3 of the 50mcg (mercury phama)of the brand I normally take and return the 100mcg tablets (almus) to the chemist x

[greygoose in reply to Emyloulou]

The only problem is, if you can't convert well, and keep increasing the T4 in order to get enough T3 (and suppress the TSH) you're going to end up with a lot of unconverted T4 in your system, which will convert to excess rT3. Which is not what you want.

[Emyloulou in reply to greygoose]

Right!!! I shall get a private FT3 test done as although my gp had requested it the hospital wouldn't do the test 😡

[greygoose in reply to Emyloulou]

No. It's too expensive. It's all about money! But, also, doctors don't really understand T3 - or the test!

[Emyloulou]

So I had more bloods taken yesterday and my tsh has now risen to 1.6. This is 4 weeks after an increase.

I also had a 9am cortisol taken and that came back at 402 but I had to rush between a couple of clinics due to the million people waiting so I don't know if that's raised it at all.

I'm back to the gp in the morning who as I've said before is great but is being told no by the labs regarding getting T3 tested. He also requested pth, calcium, crp, bnp, hba1c and a FBI and I'll get the results of them when I see him as it was hard enough work getting the cortisol and tsh from the receptionist!

I asked about private T3 testing and while he was ok with me having it done he asked me to hold off until I got the other results back which is fair enough. He also said even though he agrees that some people do better with T3 than just levothyroxine the local pct won't allow him to prescribe it 😡

I still feel genuinely awful and have lost 9lbs in a week as I have Zero appetite so only eating a little bit. I'm very overweight though so there's a silver lining to every cloud😉

Is there anything I should be asking him tomorrow