Finally ready to post

[tazbex]

Hi everyone, I'm fairly new here but have been reading lots of posts which have relevance to me and it's been really useful. This will be a long post but want to give the full story if I can. Been hypo for over 20 years, was on 150mg of levo for a long time but then reduced to 125mg, can't remember when now tbh. Been back and forth to GP for years complaining of tiredness but I didn't put it down to thyroid at first. Main issue was waking exhausted, like I hadn't slept. Had the heating off and window open at night for years as I thought heating made it worse (turns out it doesn't). Bought a humidifier for night time, no change. Even had an operation on my nose thinking I had a breathing issue, there was a slight bend on the left side but op didn't help. At some point I wondered if I needed more levo but GP kept saying bloods were within range. In October 2016 I went back to my GP as I had started getting other symptoms. Woke feeling drugged and groggy but mind over active, waking frequently during the night. At this point GP did range of bloods (see attachment) but he was happy with results. A couple of months later, and feeling worse and worse, I notice my levo pack said 'new formula' and I wondered. It was Teva and when I looked into it I realised that this may be the cause of my worsening condition. Ultimately it got so bad I made a decision to come off levo and within a week I felt better than I had in years. Still very tired but it was like a weight had been lifted. I wasn't stupid so went for a blood test 3 weeks later and of course had to go back on levo. Initially it was Teva again and almost immediately I felt awful again. Now I start noticing I also have a real tension problem, clenching jaw, waking with sore joints because I'm not relaxed i my sleep, but the drugged up feeling was the worst part. Anyway, gradually increased to now at 100mg and changed my pharmacy to get a different brand, Actavis. So the drugged feeling has gone but I still have the tension and tiredness (also have hives and IBS in this whole mix but won't go in to that). Now I wonder is the tiredness and tension etc due to needing more levo / additional supplements or less levo or is it my reaction to this brand, even though not so severe. Below I've put the results I've had, most recent first, and I've attached the full bloods from October 16, just the one page I think is most relevant. Oh I have an endo appt on Monday for the 1st time ever.

8/2/18 (was told NFA req'd)

FT4: 21.2 (12-22)

TSH: 2.71 (0.27-4.2)

31/10/17 (on 75mg from 5/9)

FT4: 14.4 (12-22)

TSH: 38.9 (0.27-4.20)

23/8/17 (3 weeks after coming off levo)

FT4: 3.5 (12-22)

TSH: >100

1/2/17 (not sure of relevance)

Erythrocyte Sedimentation Rate: 6mm/hr (1-35)

Plasma C Reactive Protein: <6

I will apologise in advance for the length of this post but wanted to give a full picture. If you've been able to stick with it to the end thank you so much.

Barbara

[tazbex]

I can't seem to see how to attach the pdf with full bloods, any advice?

Thanks

Barbara

[SeasideSusie Remembering in reply to tazbex]

You can attach a picture/photo to your opening post in a thread but I'm not sure about a pdf. You might have to type your results in.

[tazbex in reply to SeasideSusie]

Hi SS, managed to get what I think is the most relevant page up on my original post. Thanks again.

[SeasideSusie Remembering in reply to tazbex]

They really are too old to be relevant now, they were done in October 2016, levels could be very different.

The only things that stand out, and it's worth rechecking them is

B12 - 357 which isn't dire but it's really too low. An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Also Ferritin is over range. That can mean there is inflammation or infection but if it's still over range now then maybe it should be looked into.

As you have an upcoming endo appointment, I would ask for full testing and make sure that FT3 and both TPO (thyroid peroxidase) and TG (thyroglobulin) antibodies are included, as well as Vit D,. B12, Folate and Ferritin.

[tazbex in reply to SeasideSusie]

Thanks for having a look at this. I know it's way out of date, main reason for putting it up was that my GP thought all was fine at that time so I was looking for opinions on here since you're all so knowledgeable. So much helpful info here, I will definitely ask my endo for all these tests. Thanks again.

[diogenes Remembering]

If you can only achieve TSH 2.7 (high in range) with FT4 of 21 also high in range, then that really does suggest poor conversion.T3 supplmentation is indicated.

[tazbex in reply to diogenes]

Thanks for your reply Diogenes. I did wonder about T3 conversion and the GP agreed to test in Oct 16, results will be in pdf if I can get it up here, lol. The result was 3.5 (3.1-6.8), he was happy with this as it's 'within range'????

Barbara

[SeasideSusie Remembering in reply to tazbex]

It's very low in range. Should be in the upper part of range. If it's still low you could do with the addition of T3.

[tazbex in reply to SeasideSusie]

Thanks SS, thought it was quite low myself at the time but GP dismissed as he'd done what I'd asked and was within range. Not sure where it is now, will hopefully convince the Endo when I see them next week to do another test. Thanks for advice on pdf too, will look into it tomorrow. xx

[SlowDragon Administrator]

Are you in UK?

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4 plus vitamins

Private tests are available. NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

The fact you have gut symptoms is extremely common, especially if you have Hashimoto's or are under medicated

Well done on realising that it wasTeva upsetting you. Lots on here have reported similar.

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

Your FT4 is high in range, suggests you are struggling to convert FT4 to FT3, because TSH is too high.

Low vitamins can affect conversion, and so can Hashimoto's

Sore joints may be low vitamin D.

Insomnia may be linked to low vitamin D and low B vitamin levels

drgominak.com/sleep/vitamin...

Low vitamin B12 and folate are common too

Hives is linked to Hashimoto's

hypothyroidmom.com/chronic-...

thyroidpharmacist.com/artic...

[tazbex]

Thanks so much slow dragon, lots of useful information there, much appreciated. Thought I might not be converting which was why I asked GP for T3 test. Also wondered if I might have Hashimoto's. To be honest, from what I've read on here doesn't much matter what the issue is from a GP perspective they're not gonna help much. Can you help with getting the full bloods up here? Do I need to post it all manually, don't see anywhere to put up a pdf? Would like to get details up here as it's double dutch to me, just so that I can get advice on whether I need additional vitamins etc.

[Marz in reply to tazbex]

SlowDragon will not have seen your reply as you forgot to click Reply button. Easily done 😊

[tazbex in reply to Marz]

Oops, thanks Marz, will copy and paste to his comment.

[tazbex in reply to Marz]

Oh, I see you've 'tagged' SlowDragon, thanks again.

[humanbean in reply to tazbex]

I'm 98% certain that you can only post a picture, not a PDF file. And there is a very, very strict restriction on pictures. Only one is allowed per thread, and it can only appear in the first post in a thread, never in replies.

If your results are on a single page in the PDF file, then you could take a photo of the results (making sure that you exclude or hide any personal, identifying details), then upload the picture into your first post.

You would have to edit your post to add the picture. To do that, click on the v in a little square box beneath your first post, then click on Edit, then click on Add Photo. Then you have to find the photo on your PC or whatever gadget you use, and Open it. Then you click Post.

To be honest, tiresome though it is, I've always found it easier to just type in results and reference ranges. No worries about including personal info, I can leave out irrelevant blurb, and everyone can read it. It is a good idea to create the list in a word processing program or Notepad, then paste it into a post though. Less likelihood of pressing the wrong button and losing it all...

Edit : I forgot to mention... Healthunlocked doesn't take too kindly to fancy formatting. In fact it doesn't like formatting at all and will strip it out when it can. The result is often a mess. So only use plain text, don't try and use tables or anything like that.

[tazbex in reply to humanbean]

Thanks for your help HB, managed to put what I think is the most relevant page up on my original post,