Hi new to this site and newly diagnosed auto im... - Thyroid UK

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Hi new to this site and newly diagnosed auto immune thyroiditis.

dee2229 profile image
14 Replies

Original blood numbers were TPO 1005 and TSH of 60. Started taking 50 mg and had repeat bloods done after approximately 5.5 weeks and tsh is now 10.4. Dr wants to leave meds as they are and retest in 2 months. This seems to go against everything I'm reading which suggest 6 to eight weeks being the optimal period for adjustment. Can anyone advise on this from their experiences. Any help would be appreciated. Thanks

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dee2229
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helvella profile image
helvellaAdministrator

Bear in mind, each of us has only limited understanding and experience. But I have come to question whether even 6 to 8 weeks is appropriate. Yes - it appears that it can take that long for a TSH level to fully stabilise. Though surely, once it is absolutely clear that another adjustment is required, then get on with it? Maybe at four weeks?

Rod

dee2229 profile image
dee2229 in reply tohelvella

Thanks for the response. Not used to questioning the dr but I do think another 2 months is a long time. Did ask if I tested again in a month and tsh was the same would he change anything and he said no he would leave it for another month?

serenfach profile image
serenfach

I would go by how you are feeling, not what the blood tests say. If you start to feel better, then wait, if not, go sooner. The GP probably will not remember when you came in last (if he can remember who you are at all!), so just go by what your body tells you. A friend who has just started taking T4 was tested after 3 months and then told to come back in a year! I told her to change GPs.

Shona64 profile image
Shona64

Hi especially with high antibodies your TSH can become very variable and not good indicator as I found out. I have always gone with my symptoms. Your body is best indicator x

dee2229 profile image
dee2229 in reply toShona64

Thanks for your response. Have you found your tsh goes up and down then?. Like I said this is all new to me. Am feeling a slight improvement but still have no get up and go! And if the dr wants to wait another 2 months not sure how I'm going to cope with the Christmas period if you know what I mean. Was thinking of having bloods done at 10 weeks of treatment and then see. Can I question the dr about treatment levels?

Moggie profile image
Moggie in reply todee2229

What happens when you have an auto immune illness is that your body is attacking itself, namely your thyroid BUT it wont attack it continuously, it will attack it in fits and starts, so sometimes your thyroid will be producing some thyroid hormone and other times, when the auto immune illness kicks in again, it will be producing a lot less, probably nothing. That means that yes your levels can fluctuate and your levels of levothyroxine can differ but the more your thyroid is attacked the less it will be able to bounce back so eventually it will produce hardly anything whether it is under attack or not.

All the above means that, in answer to your question, yes your TSH can go up and down but I really would not be happy with a GP that left me with a TSH of 10.4 - even the NHS guidelines say that 10 is the limit so why is your GP telling you it's o.k. to leave you above this level. Go to your chemist, or Amazon, and get a book by Dr.Toft to help you understand things better.

amazon.co.uk/Thyroid-Disord...

Hope you understood that (confused myself for a bit there.lol.)

Moggie x

dee2229 profile image
dee2229 in reply toMoggie

Moggie thanks for your response. You have answered a question for me and that is about the auto immune side of things and that is things will swing back and forth for a while. Also confirmed how I feel about the tsh level still being high. Will follow your link and do some more reading. So pleased I found this site and can talk to people who share the same experience's. ... don't feel so alone!

Moggie profile image
Moggie in reply todee2229

You definitely wont feel alone now you have found us. We don't mind how often or at what time people ask questions or need help on here, there is normally someone about to respond.

Welcome aboard.

Moggie x

p.s. Auto immune illness does not necessarily just affect the thyroid - lots of us on here also have gut issues and some of the experts say that thyroid auto immune conditions start in the gut - so even more for you to think about.

Also ask your GP to test your B12, VitD, iron, Ferritin (iron stored in your body) and folates as if any of these are low (which they can be with auto immune illness) they could stop your thyroid meds working properly - and make sure you start getting copies of ALL blood tests so that you can check what your GP is doing is correct and you can post results on here for advise and help (don't let your GP say "normal" or "in range" to you as NHS ranges are not necessarily optimal for thyroid patients), and last but not least, but you may already know this, you need to take your levo, at least, two hours away from any food or drink (except water) so that it can be absorbed into the system properly without being hindered.

dee2229 profile image
dee2229 in reply toMoggie

You really know your stuff! Having additional problems with high bp no's and will be having a 24 hr test in a couple of weeks. Allways thought I am a bit white coat but no's up at home to. Dr has tried to medicate me before but two diffetent types of meds sent my heart rate through the roof and the other one through the floor so stopped taking and thought I would monitor which I have been doing. Is there any proven connection between the two, that being auto immune thyroiditis and high bp?

Moggie profile image
Moggie

Yes thyroid illness does effect blood pressure. Just found this for your to read.

Mild high blood pressure . Hypothyroidism may slow the heart rate to less than 60 beats per minute, reduce the heart's pumping capacity, and increase the stiffness of blood vessel walls. All of these effects may lead to high blood pressure. Indeed, patients with hypothyroidism have triple the risk of developing hypertension. All patients with chronic hypothyroidism, especially pregnant women, should have their blood pressure checked regularly.

Explains it nicely I think.

Moggie x

dee2229 profile image
dee2229 in reply toMoggie

Thanks for staying with me Moggie... people usually switch off or have you as a hypochondriac! !. New question. . Should I try to get the thyroid levels sorted before trying to deal with the bp? Sounds a bit like a chicken and an egg scenario to me..??? Oh well more research for me I think. Xx

Moggie profile image
Moggie in reply todee2229

Your blood pressure could well sort itself when your thyroid levels come down - don't know how long it will take but if as your thyroid condition is causing your high bp then if you/your GP get your TSH down to a more reasonable level then, in theory, your blood pressure should also drop.

I'm no expert on this but I do know that your TSH needs to be a lot lower than 10.4 for your symptoms to reduce and seeing as high bp seems to be one of your symptoms then your GP needs to get your TSH a lot lower.

Obviously you will still need to have your tests done to see what is going on but I would be going back to my GP and asking for an increase in thyroid meds to see if, in the couple of weeks you have got to wait for the test, in makes any difference.

Moggie x

humanbean profile image
humanbean in reply toMoggie

A few years ago I developed a blood pressure that looked surprisingly healthy (about 108/75), considering that at the time I was a heavy smoker. I stopped smoking and my BP stayed low for quite a while, but then it started rising, and rising - up to as high as 158/105 at rest, or when I first woke up in the morning.

Within about 6 weeks of going on levothyroxine my blood pressure had started dropping to a much more healthy level again.

So, for some people at least, the BP effect of thyroid treatment is very quick.

Oh, and I just remembered - I was very anaemic - improving my iron levels also lowered my blood pressure substantially.

Moggie profile image
Moggie

Have also found this old question on here which has some very good answers and links in it for you to read.

healthunlocked.com/thyroidu...

Hope it helps you to understand a bit better and to educate your GP.

Moggie x

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