Underactive thyroid

[jayney86]

Hi
I had my daughter almost 6 months ago and haven't really been well since (shingles, sore throats, sinusitis, and about 3 colds), I feel constantly drained physically and mentally. I know this goes with the territory as I have a 3yo as well but it's a different kind of tiredness. I also find it hard to focus my brain & can't seem to concentrate or understand things easily. I also have been feeling very low and like I can't be bothered to do anything (not in respect of my children but with myself). My hips and legs also ache and I've got this weird taste in my mouth all the time!
I had blood tests in July and my TSH was 7.2 so my go ordered a retest which came back with a TSH of 7.83. However my usual gp was away so another dr looked at my results and said to come back in 3 months! Just want to get an outside opinion.
Thanks

[olivo]

Can't help but will watch with interest. I have many of the same symptoms and am waiting for my blood results to arrive any day now. The hop and leg ache is interesting, I though this might not be relevant so didn't tell the GP.

Hope you get someone more knowledgable along soon.

[hellymelly]

Way too high, should be around 1. You should be put on thryoxine asap. I have the same thing, and it was hideous before I went on the meds, I am still tired but not so bad, I really feel for you. Did they test antibodies? I understand why they wait, and my thyroid had many ups and downs, but if you have antibodies then it will only get worse.

[jayney86]

Thanks for the replies. Don't think they've tested for antibodies. I've made an appointment to see my usual dr (the one who originally ordered the retest) next week so going to explain to him how I'm feeling. When I first saw him I didn't know anything about a under active thyroid but once I did a bit of research after he'd told me my first lot of blood test showed a raised thyroid result, I realised that I had quite a few of the symptoms that individually I either put down to just having a baby or didn't think we're bad enough to go see the dr about.
Haven't read anything about the funny taste in my mouth though and my sense of smell has gone a bit funny too.

[hellymelly]

I had all sorts of strange symptoms, faint feelings, palpitations, the classic constant chest infections, aching hips etc. I actually had a fair few of these for years before they finally accepted my thyroid wasn't right. I had been going back and forth for so long (my mother is hypothyroid, so I suspected I was too). Finally my TSH hit twenty two by which time my brain was like mud and I had no enthusiasm for anything. It is so easy to think it is just the sleepless nights, breastfeeding etc. I hope they sort you out op.

[jayney86]

Thank you, think I'm a bit paranoid about it all being in my head but thinking about it I haven't been myself for months and months. Just want to be me again. Xx

[hellymelly]

With a TSH that high it is certainly not all in your head! Poor you, it is horrible struggling along with a thyroid not working. Insist they test for antibodies now so that you know if it is auto-immune or not.

[jayney86]

Thank you (again), think I'll write everything down when I go to the drs on Wednesday as my memory is shot too! Part of me is expecting them to say have another blood test in a month. Will definitely ask about antibodies too. Could that explain the colds etc? I get mouth ulcers regularly too.

[jayney86]

Saw my dr today so wanted to give a quick update. Basically he said that they want to do another blood test to show a consistent rise as they don't like to medicate until TSH levels have got above 10. My dr said he doesn't want to go straight for medication as thyroxin taken unnecessarily can cause heart problems and as I'm young (almost 28) to have thyroid problems they don't want to go straight for medication. He said when I book my next blood tests I need to ask to do antibodies test aswell to see what's causing my thyroid to struggle. X x

[RockinD]

That's a cautious approach.

Your TSH may do a number of things. It may settle to the right sort of level (around 1), it may stay pretty much where it is, or it may rise, and it may do any of these things at any sort of speed. It took six years for my TSH to rise from 1.6 to 4.2, by which time I was very unwell indeed and no nearer to being treated.

You are already outside any usual lab reference range and if you are heavily symptomatic you might want to ask the question, what is the point of having a reference range if you then choose to ignore it?

You will only risk experiencing heart issues with thyroxine if you are taking too much and no-one would want to do that for any length of time as it produces other/unpleasant symptoms. Your doc is scare-mongering I fear.

When you get your next tests, ask for FT4 and FT3 as well as TPO and TgAB antibodies. That way the doc will have a full picture on which to base his advice.

[hellymelly]

I think your GP is clearly not very up to speed on thyroid issues. Most GPs would medicate once you got past 5, in other countries they have lower limits. My GP likes mine to be under 2. A second blood test is sensible, as long as they do it soon. And I completely agree with Rockin on all the points she made. Ask for full bloods, and soon. It isn't any good for your heart when your thyroid is underactive and un-medicated either for a start.
Also, I went on natural thyroxine privately, while my GP was still telling me my thyroid was fine, it was too much for me at the time, (probably too much T3 for my system ) and I quickly went hyper, which feels horrible, racing heart, sleepless etc. I stopped taking it. No one continues on too high a level of thyroxine as it feels horrible. You just want to feel as normal as possible.

[jayney86]

Thank you for the info, will book in for blood tests sooner than the 6 weeks he said to.
All I want is to feel normal, I can understand why they are reluctant to medicate but not too sure he fully understood how emotionally crappy id been feeling. The tiredness I can cope with (just about! I expected to be tired as I have a toddler & a 6 month old, I also only have 1 kidney so I'm used to feeling a bit sleepy) but the low mood and feeling so rubbish about myself I'm really not used too. Not that I had buckets of self confidence & loved myself before but I've never felt like this about myself and be so negative and miserable. Xx

[hellymelly]

I lost all my enthusiasm and zest, and felt a sort of strange flatness about everything. Many people feel properly depressed. I am still not as zesty as I should be, but my dose is rather low and needs upping I think.

[jayney86]

Hi all, sorry for the lack of updates!
Basically I've had more bloods done last week. My TSH came back as 6.83 however my antibodies came back particularly high so the dr asked me to come in for a chat. He asked how id been feeling, I have been feeling a lot better not as low and not as tired. I've been taking the floradix iron & vitamin supplement which I think has helped. I told the dr this and he said if I'd said I was still feeling crappy then he would have suggested a 6 week trial on a low dosage but as I was feeling better it would be best to just leave it. I agree with him and I don't want to rush into taking medication but I'm also really worried that now it's just a case of waiting to feel awful again & I don't want to get back to that or possibly worse then have to go through blood tests.
I'm hoping to return to work in the next couple of months & with Christmas coming too I just want to be able to cope & not have a meltdown again lol!!
Thanks again for everyone's help previously :)

[RockinD]

A TSH outside the lab range and high antibodies, antibodies that will gradually destroy your thyroid gland. As the levels of antibodies fluctuate, so will your symptoms, so yes, it is a matter of waiting to feel awful again.

You really need to be treated, replacing the thyroxine that your body is not making and taking gluten out of your diet to starve the antibodies. Putting it off is not the answer, honestly. Nor for that matter is a low dose of thyroxine. If you are under 50 and have no signs of ischaemic heart disease, the starting dose is 100mcg.

Research the effects on the body of untreated hypothyroidism. They are many and varied. You don't really want to put yourself through that.

[jayney86]

Thanks RockinD, I will definitely do some research.
I'm still breast feeding and I'm slightly worried this is still having a effect on my hormones. As I said I need to do dome research as I really don't know all the facts and sort of stumble through my chats with the dr. :)

[sanfairyanne]

i think that was a big mistake, jayney. this condition is already wreaking havoc on your body. a tsh of 6.5 and high antibodies is not going to just go away. but if you are not going to take meds right now, have a read of ways to stop your autoimmune response. some people try gluten free for instance.
in all honesty though, i would ask to start on meds
my tsh was just over 10 but it took me 2 years to recover from the damage it had done during the time it took for me to start treatment

[RaisingMightyGirls]

I have no normal thyroid function to full thyroidectomy from cancer in 2012. My experience to date suggests that you should be on medication. But I'm not a doctor so I can't say for certain. I take 125 mg of thyroxine every day. Without these tables my body simply couldn't function. I would definitely do further research and seek further medical opinion sooner rather than later. If you feel like a chat, catch me on my blog //www.raisingmightygirls.blogspot.co.uk I'm constantly raising awareness of thyroid issues in particular thyroid cancer. Good luck.

[jayney86]

Thank you for all the responses, I definitely needed to hear from people that have gone through diagnosis. Been reading lots about untreated hypothyroidism and the complications of this. Glad to have extra information rather than taking the drs word as bible. I'm really not happy with just leaving it as it is and basically waiting for it to get worse.
X

[jayney86]

Just wanted to ask how long it took for people to feel better once starting medication? :)

[RockinD]

I started on 75mcg and felt benefits from the very first dose. If you have a doctor who understands that you can start at 75 or 100mcg from the off if you are under 60 and don't have heart disease, then this could be the same for you.

If you have a doctor who wants to start at 25mcg and consider a raise every 6-8 weeks, then it can be a very long time before you see any change at all.

They should treat by how you feel, but too many are bound by the numbers.

[jayney86]

Thank you. Hoping to get an appointment tomorrow or Tuesday. Been ill again the last few days, had a really bad headache, cough and a sore kidney. Think I have a touch of mastitis too :(! It's time like this it really knocks me, if the kids sleep well and I can rest then I'm fine.
Thanks again for all the help and advice, will keep this post updated (if anyone interested lol) :)