What else is wrong?

[boxesandplanes]

Hi

I'm new here! I'm looking for suggestions of related conditions that I might have to hashimotos which I have recently been diagnosed with, please.

I will try to keep it brief! I suspect I've always had thyroid issues but they were never quite so prominent until I had kids nearly 4 years ago, then whoosh, it got really bad. 

I only got diagnosed with hyperthyroid (overactive) after my second child, but I definitely had bad symptoms a few years prior to this. Anyway, I went on carbimazole for a very short time (maybe a month) and then TSH went up to 90 and endo said come off medication and it will sort itself out and diagnosed post-partum thyroiditis. 

It did sort itself out, but then I went hypothyroid again. I also got tested for antibodies and told that it was hashimotos and not postpartum thyroiditis. Now been on levothyroxine 50mcg for 1 month which brought TSH to 3.2 and my dose increased to 75mcg. 

Initially I saw improvements, but now things seem to be going backwards and other symptoms creeping in which are similar to how I felt when thyroid was overactive.

I suspect that I have an underlying condition of which my thyroid swinging back and forth is a symptom. It seems to be connected to my periods. Just before my period starts I get really bad PMS symptoms and feel like when my thyroid is overactive. Then after period it settles down and symptoms lessen. 

Is this normal? Is it just taking a while for my thyroid to level out?Is there a condition which causes your thyroid to swing back and forth between hypo and hyper?

Thanks!

[shaws]

Welcome to our forum,

We have to read and learn, unfortunately, if we want to get rid of clinical symptoms and feel well again. 

It's not easy due to the fact that many doctors are unaware how to treat us as they haven't been trained re thyroid gland dysfunctions. 

You have hashimoto's which is the commonest form of hypothyroidism. It is antibodies which attack your thyroid gland and sometimes the antibodies are too much and at other times low. These are a couple of links below.

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

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

The aim of levothyroxine is to restore your thyroid hormones so that you feel well again - not necessarily anywhere 'within the normal' range which many GPs believe is o.k.  

You will need increases of 25mcg about every six weeks until your symptoms are relieved. Not when the TSH is 'normal' - we need a TSH of around 1 or lower

The blood test should be the earliest possible time and don't eat before it. Also leave about 24 hours between your dose of levo and the test and take it afterwards. You can drink water. This allows the TSH to be at its highest level and may prevent the doctor adjusting your dose to keep the TSH 'in range'. Some think below 1 is wrong.

If GP hasn't tested B12, Vit D, iron, ferritin and folate ask for these too as we can be deficient and thus can cause problems too.

Always ask for a print-out with the ranges and post if you have a query.

[boxesandplanes in reply to shaws]

My ferritin is low, and I'm on ferrous sulphate. Vit D and B12 are in range but I'm supplementing anyway. Don't think I had folate tested, will follow that up, Thanks

Doctor has said she wants to get me to TSH of about 1. She just read it off a recommendation from somewhere based on age.

[shaws in reply to boxesandplanes]

Your GP is on the right track when she said TSH 1. It should be TSH 1 and below as most of us feel better then. It's when they stop giving hormones to keep us 'in range' that problems can arise for us.

[boxesandplanes in reply to shaws]

Ok, that'f good to know, thanks. 

I'm a bit worried about going into hyperthyroid territory really as that really was hell.

[shaws in reply to boxesandplanes]

Some doctors keep patients at the 'top' of the range and they are quite unwell.

[crimple]

you might like to try a gluten free diet to help Hashi's. I t helped reduce my TPO's

[boxesandplanes in reply to crimple]

Ok, thanks, I'll give it a try! Can you tell me what TPO stands for please?!

[Sid_Arthur]

Wonder if this might provide any useful pointers in your particular case? :

autoimmunityresearch.org/pr...

S.A.

[boxesandplanes in reply to Sid_Arthur]

Thanks for this, I will try to find time to read it, but my brain is really not functioning very well which makes it so hard to take it in!

[boxesandplanes]

Thanks all for your replies. I also tested positive for anti nuclear antibodies. Is this a different thing to the thyroid antibodies?

I also am getting tested for cortisol levels as i get very frequent adrenaline surges. I have been tested for cortisol before though and it was apparently ok.

[greygoose]

'Is there a condition which causes your thyroid to swing back and forth between hypo and hyper?'

Yes. It's called Hashimoto's disease. And in order to stop swinging between hypo and hyper, you need your TSH to be suppressed. But doctors Don't know that, I'm afraid. Resist any attempt to reduce your dose to get your TSH 'in range'. You will only be 'hyper' if your FT3 is over-range.

It's perfectly normal to feel well on a dose for a short while, and then find the symptoms are creeping back in again. It just means that you need an increase in dose. 75 is only a tiny dose. You will probably need a lot more than that before you feel well.