In need of help

[lindawales]

In need of help, I was on 75mg of leverthyroxine aday. I went to see my endo, who then put me on T3 5mg twice a day and reduced my leverthyroxine to 25 mg once a day, she then sent me for bloods done, i now have the results TSH 0.10 B12 163L Folate 6.9 Ferritn 74 Ranges 13.8 3T4. I have no idea if this is right, but i am sweating all day not sure if thats something with my HRT , starting to get pains back and also gained 11 pounds in 2 weeks , would appreciate help please to know if all this is ok.

[bluebug]

Can you edit your post put in the ranges for your folate and ferritin result please?

[bluebug]

Did you have your vitamin D level tested?

[bluebug]

In regards to your results:

TSH:

If you are taking T3 your TSH and FT4 should be depressed. You actually need to have your FT3 tested and know the result and range. If the NHS won't test this for you you need to have it done privately.

You want the Blue Horizon plus 11 if you haven't had your vitamin D tested otherwise the plus 10 - thyroiduk.org.uk/tuk/testin... It is a finger prick test you can do at home and you get the results by email in a couple of days.

Vitamin B12:

You need to take your test results to your GP asap and point out you have low vitamin B12. If you doctor prescribes you vitamin B12 it will likely be cyanocobalamin. Don't bother filling your prescription as that's rubbish as you can't absorb it. Go online to Amazon and buy methylycolbalamine lozenges either Solgar or Jarrows. Buy the highest dose you can find.

[bluebug]

I forgot to say without optimal nutrients your endo and GP can play around with supplementing your thyroid hormones but you will feel dreadful as without optimal nutrition they don't work properly.

[humanbean]

You were on 75mcg Levo.

Now you are on 25mcg Levo + 10mcg T3. This is equivalent to 25 + 30mcg Levo i.e. 55mcg Levo.

You've had a substantial reduction in your overall dose, so it isn't surprising that you feel much worse and much more hypo.

It is very common for doctors to over-value T3. Your endo probably thinks he's given you an equivalent dose to what you had before, or perhaps even thinks he's increased it. I've seen some ridiculous statements saying that T3 is 14 times as strong as Levo, which is utter rubbish. Patient exerience seems to suggest that T3 is closer to 3 times as strong as Levo for the same weight.

[shaws Administrator]

Humanbean makes a good point. They way overestimate the dose of liothyronine. The 'effect' of 20mcg of T3 in the UK is said to be around 60mcg levo - some might find it to be 75mcg. So the 'effect' of 25mcg can be between 75mcg and 100mcg levo. So, in effect, you are on a lower dose of thyroid hormones than before when in fact it should be higher!

[lindawales]

Hello all, thank you so much for all your replies so far it has given me a lot to think about and more questions.

bluebug - With regards to the ranges, unfortunately I have not managed to get a copy of my actual blood test results, I have asked for the ranges over the phone but they keep giving me the result, for example FT4 13.8. I am due to see my GP tomorrow so I will ask for a copy of my results.

As for Vit D I unfortunately haven't had a test I will have to add this to my list of things to chase. The Vit B12 has been tested in the past and I am on Cyanocobalamin (50), thank you for the information about the medication, I will trawl Amazon and give that a go.

Humanbean, Shaws and Eljii - Thank you for all the information also in relation to the T3, this has helped but, I am still working on getting my head around it all.

For everyone - I am hoping to get in to see my GP tomorrow as I have been on my T3 for 7weeks so I am asking for blood tests, can I ask what do you recommend I ask my GP to test for? from all your responses it sounds like they are missing a lot and I want to get this right.

On a side note/rant I am having a bit of a nightmare with my Endo currently. My Endo has stopped seeing me, instead passing me onto another Endo from outside the area because they are "busy and way behind". Unfortunately my experience of this new Endo was well... not great, I don't feel she understands Thyroid very well or perhaps she does and she just believes she is right refusing to hear or acknowledge any other opinion other than her own.

I get the feeling they are just trying to get rid of me and I am worried as I still don't feel well (not that this matters to them). She did say when I saw her that as all my results were in the range that I would not see them again and it would be managed by my GP, she did ignore my protests that I still don't feel right. We did make a tiny bit of progress as I am now on T3 and she needs to review me so I will be seeing her next month, I suppose I am asking does anyone have any advice moving forward? I just want to be prepared as I expect she will push me back to GP.

Anyway sorry for the very long post and sorry for not replying individually to each poster ... I hope this gets seen by you all. Thank you in advance for future help.

[bluebug in reply to lindawales]

GPs are a law onto themselves so ask your GP for tests and stuff you need but if the GP refuses you are going to have to self-test and self-medicate. Start a new thread if you want more help after you have seen your GP.

[SlowDragon Administrator]

As the others have already said, B12 is seriously low. Perhaps you need injections? Or testing for Pernicious Aneamia (PA)

Others who know more should advice - or you could post on PA site

When supplementing B12 we also need a good quality B complex - eg Jarrows B right complex - plus Jarrows B12.

You really need Vit D level checking - often also very low with thyroid

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause in UK of being hypo. NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.

Make sure you get the actual figures from tests (including ranges - figures in brackets).

You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

vitamindcouncil.org/tag/aut...

chriskresser.com/the-gluten...

[Angel_of_the_North]

Sounds like setting you up to fail. 10 mcg T3 is only equivalent to about 30mcg T4 so you are now on less thyroid hormone than you were before getting T3. Unless you were overmedicated before, I would have expected endo to add 5mcg T3 to your existing T4 or drop it to 50mcg and add 10 mcg. Putting you on T3 and not testing FT3 is just stupid. Sounds as though you are now very undermedicated.