Results - is this why I have been feeling worse again?

Hi,,

I had to battle for thyroxine after 9 months of seeing the GP feeling so badly fatigued, weak, losing my eyesbrows, hair loss, anxiety.... I got told my results were fine time and time again when TSH was 5.35 and 6.51. Told it was all in my head and just depressed and anxious. It drove me bloody anxious. By May after I did a few private tests my GP took me seriously. My TSH hit 9.28 (0.27-4.2) and I think T4 was 15.7 (12-22). Finally he gave me thyroxine 25mg. Test after 7 weeks showed TSH had dropped to 6.8 and T4 was 17. I had started to feel so much better. My energy crashes which led to me being bed bound for days on end were happening alot less often. I took my kids on holiday for 4 nights an hour away in June and I coped so well. I only felt crash like on the last day. So things improved. I asked for another month on 25mg, my choice as I was feeling well.

In the last 4 weeks I have been struggling again. I put it down to the summer holidays, kids home and doing alot more at home. Cleaning and cooking Last 2 weeks if I over do things i crash alot. 2 weekends ago I felt so ill. My legs were so very weak, my thighs felt they were burning. I felt off balance again like last year, exhausted and just a general drained feeling. For the first time in 8 months I asked the GP to come and see me. Right now since being this ill I have also had a relapse in anxiety and agoraphobia, due to spending so much time at home. He came out, said it did seem I had CFS which I have had suggested to me before. I was attacked by my brother 4 years ago and have had PTSD which led to me becoming very anxious and in turn chronically fatigued so they think I have had CFS. He said he would leave me a blood form and said he would test me for anaemia?? I said I am not anaemic, I never have been. He said maybe i had a virus but no it was an almighty crash i know what they feel like.

I picked up the blood form and he wanted to test for glanudlar fever, lupus and other autoimmune disorders, blood film, fbc, diabetes tests...... I right now struggle to do appointments and find blood tests VERY difficult because last September when i was really poorly and getting no answers from the GP and i was saying this is my thyroid, but noone listened, my GP kept dragging me in for more bloods. I had a terrible panic attack having blood taken 11 months back and since then I just hate bloods and am terrified of going back. I have a mental block now, it would never have happened if he hadn't have dragged me out to test for diabetes when i was already feeling so weak and unwell. Which was normal. Since then my agoraphobia crept up again. I was far too ill to go that day. I told my husband I will face blood tests and appointments again when I am well enough to cope, being this poorly my anxiety has taken a huge blow. I guess that makes me sound a bit weird but right now taking my children out in the car causes me anxiety, I rarely do shops due to how ill I have felt this last year but I had started getting out much more until this latest set back. When i feel well my anxiety is much better.

So my results today I have had done private show my TSH has climbed again by a point and T4 has dropped too. So am i right to think this could be why I am crashing in energy again and having to pace myself so much? I wasn't as ill a month ago, I was definitely improving with the thyroxine, now suddenly taken a huge set back and my anxiety has increased with it too. (photo of todays results attached to this post).

I have forwarded my results to my GP and he is calling me tomorrow. He will insist on the 50mg which I will agree to of course. I am just wondering am I likely to have side effects doubling my dose?

Also would you say I don't need to force myself to do these further bloods my GP is requesting? I had a thorough blood test done private with thyroid in July which showed my B12 had gone up to 1070, ferritin up to 49. They were both so low previously. Folate is good, Vitamin D was about 70. CRP was 1.6. All really good. My thyroid antibodies were normal too.

I felt sad today when I saw my results but hopefully 50mg will do the trick and I will improve again. I have been ill for over a year now, last spring i had the worst fatigue and by November I was so weak I couldn't do anything at home. I am now able to cook, clean, shower but I have to pace myself or I crash badly and feel terrible weak and poorly. The main symptom for me has always been the chronic fatigue and weak legs. Is this normal with an underactive thyroid if my TSH is only about 8? Then again over the winter it was 6-7 and I was so ill. I just wonder can this just be an underactive thyroid I am dealing with or does it also sound like CFS with how I crash and have to pace myself?

Thank you

Julie

[greygoose]

CFS isn't a disease. It is a syndrome. Syndromes are a collection of symptoms. Symptoms are caused by something. And, with a TSH that high, it's pretty obvious that your fatigue is caused by low thyroid hormone. I've said it before, and I'll say it again, your doctor has absolutely no idea what he's talking about, and he's kept you sick all this time, because he doesn't want thyroid to be the source of your problems - that's pretty obvious by the way he keeps doing all the tests under the sun, but avoids the correct thyroid tests. He's a looney! lol

Yes, a TSH of 7.95 can make you feel like hell! Given that a 'normal' TSH - from someone who has absolutely no thyroid problems - is around 1, and that at 2 your gland is beginning to struggle, and you are overtly hypo at 3, 7.95 is way too high.

And it can cause all sorts of problems - it can most certainly cause muscle lose and agoraphobia. And fatigue, and about 300 other symptoms. Not everybody has the same symptoms, and you don't have to have them all to qualify.

I have to say, I don't think you did the right thing in refusing that increase to 50 mcg. Doubling your dose will not double your symptoms, it will probably halve them! As your levels go up, your symptoms should go down. So, in future, do make sure you test after 6 weeks on any dose, and get an increase of 25 mcg. You still have a long way to go, yet. But, it can only get better!

[Hidden in reply to greygoose]

Very reassuring thank you.

When do I know when I am at the right dose? Will it stop going down and just level out and stay there? then they take bloods less often?

I shall in future listen and take the dose my GP suggests. I was silly to think 25 would help anyway.

Doubling the dose won't cause side effects? that's my worry.

Thanks

Julie

[Clutter in reply to Hidden]

Jingyd35,

No-one can tell you how long it will take your thyroid levels to stabilise. My sister's TSH rose to >7.0 in the spring and 25mcg increase brought it down to 0.35. However it is possible that you will need more than 25mcg which is why you need a follow up thyroid test 6-8 weeks after increasing to 50mcg.

Once your TSH level is stable around 1.0 your GP can check you at 3 months, then 6 months and after that annually.

________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Hidden in reply to Clutter]

Thank you Clutter, that is good advice.

I really hoped as the 25mg helped the first 7 weeks I hoped it would help futher and that's why I wanted to stick at the 25mg as I also fear side effects if I increase it.

[Clutter in reply to Hidden]

Jingyd35,

Refusing the dose increase has also caused adverse effects. GPs are usually very conservative about prescribing dose increases. I think it is better to accept it and if you do experience adverse effects they will usually pass within a week or two. If not, you can always reduce dose slightly by taking 25mcg/50mcg alternate days.

[Hidden in reply to Clutter]

Thank you Clutter. Is the dose only able to go up in 25mgs?

[Clutter in reply to Hidden]

Jingyd35,

In the UK, yes, but taking 25/50 alternate days is effectively a 12.5mcg daily increase but that is unlikely to be sufficient for you right now.

[Hidden]

Great, thank you

[Marz]

You need the FT3 and Thyroid anti-bodies tested too ...... Were they on the list ?

[Hidden in reply to Marz]

I've had them tested many times this year. T3 was 5.8 ish last test in may and my antibodies I've had tested 3 times this year and all fine. This latest test i just did tsh and t4 as that seems to be all my gp takes into account.

[galathea]

A. Normal replacement dose of thyroxine is nearer to 150 than 25. The problem with taking 25 mcg is that its enough to help slow down your thyroid, but not enough to replace the missing hormones.

What side effects do you fear from taking more?

[Hidden in reply to galathea]

I fear side effects such as anxiety, fast heart... that kind of thing. My gp told me they could be the side effects so if always worried especially as I have anxiety and could do without more

[Angel_of_the_North in reply to Hidden]

Those are also symptoms of being under medicated - low thyroid - especially anxiety and palpitations. Fast heart rate can also be caused by low iron.

[Hidden in reply to Angel_of_the_North]

I am just concerned with doubling the dose causing side effects.

I am not having heart palpitations at present, or any kind of heart issues. They are just my concern if i have to double my dose. I was just wondering if they are common with higher doses.

[Angel_of_the_North in reply to Hidden]

50mcg is the normal STARTING dose for an adult - it's not high. Low thyroid hormone can permanently damage your heart (and your brain).

[Hidden in reply to Angel_of_the_North]

Well that's worrying to know lol! Thank you.

[galathea in reply to Hidden]

Not really common.... Levothyroxine is an inert storage hormone with 4 iodine atoms... To make it useable it has to be converted into triodothyronine by a process which removes one of the atoms, thereby making t3. Unless something is very wrong with your whole body and messaging system, you are pretty unlikely to convert all of the storage hormone into active hormones.

If you go hyper, you will know about it, its not a state people would willingly put themselves in. Fortunately, if you go hyper as a result of taking too many meds, you can hold off the meds for a day or so and return to normal.

[Hidden in reply to galathea]

Thank you for your reply. So side effects aren't really common then, that's reassuring to know.

I spoke to my GP today and he wants me on 50mg, he said we will re test in 2-3 months. I said no I will retest in 6-7 weeks like i normally do. Honestly i feel I am leading him and he is the only GP that has listened and helped, the others said my thryoid was perfectly fine because I have negative antibodies.

My GP today though said how are you feeling? I said today I feel very unwell so he asked if I'd had the bloods he requested, fo thte glandular fever, lupus, liver, fbc etc... I said no because I am not well enough right now to get to a blood clinic. He said he wants to do a full screen on me to make sure there isn't something else going on. Urgh, I am fed up of all these tests.

Thanks for replying to me.

Julie