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It sounds perverse, but I really hope I have an under active thyroid

(37 Posts)
BerylStreep Wed 20-Feb-13 23:45:47

I went to see my GP today, in the hope that I will get a diagnoses for an under active thyroid.

I haven't felt right for ages - I can easily sleep for 11 hours a night, am exhausted, no libido (at all), have put on a lot of weight. I commented to my Mum (who also has an under active thyroid) the other day, that life feels like I am trying to run up a mountain. It shouldn't feel this hard - I am only in my early 40s.

My GP sounded fairly sympathetic. I'm getting blood tests done on Friday. I have had tests done before - in 2008 they came back as borderline, but I found out today that the last 2 tests which were done, in 2009 and 2011, although they came back 'normal' were only just inside the lower range, which I didn't know before.

It sounds so wrong to hope that I have a long-term condition that will require constant medication for the rest of my life, but the alternative is that this shit feeling is just the new normal, which has no treatment.

AThingInYourLife Wed 20-Feb-13 23:51:49

It's not wrong to hope to be diagnosed with an easily treatable condition rather than not know why you feel like shit.

The normal range for thyroid function leaves a lot of scope to be hypothyroid and not get treated.

I hope you feel better soon.

Pops78 Wed 20-Feb-13 23:59:19

This was me 3 months ago when I was finally diagnosed with underactive thyroid. Not 100% yet, getting the right dose takes time but I completely understand where you are coming from as had same thoughts after so long feeling awful. They believe mine was post partum as I was tested when I had my daughter 3yrs ago good luck x

BerylStreep Thu 21-Feb-13 00:23:50

I suspect that I have been hypo for several years. Aches and pains, fatigue, carpal tunnel syndrome, loss of outer eyebrows, dry skin, anxiety.

I sound like a right barrel of laughs. I feel sorry for my DC, as I feel like I should be spending more time going to the park, out cycling, going for walks with them, and I don't do any of that with them. I feel like I hit an impenetrable wall of tiredness.

I have searched a few threads on here (AThing, I have seen some of your previous posts), and it appears that one of the hardest things is getting a diagnoses in the first place.

AThingInYourLife Thu 21-Feb-13 08:19:32

grin you've seen me ranting about this before, then?

I think it's appalling that you are symptomatic, have a family history of thyroid problems and borderline numbers and your doctors have been prepared to leave you feeling so tired and unwell for years until you get the right score on their test.

It would have cost little and risked nothing to have started treating you to see if you would be responsive to drugs.

Within a week of starting on levothyroxine I felt like myself again.

Kick up a fuss if you need to. Don't let them waste your life while you disimprove to the level that will force these lazy, chart-reading fuckers to actually listen to you.

Best of luck with it smile

That tiredness is awful. Nothing touches it.

But it is easily fixed and then life can go back to normal.

digerd Thu 21-Feb-13 09:25:09

When I was over active that causes anxiety, but underactive is the opposite and I went so laid back, I was slurring my words as if drunk.
My sis was very underactive but had no symptoms other than her periods stopped.
Hope you get it sorted.

BerylStreep Sat 23-Feb-13 23:42:47

Well, gave a blood sample on Friday - only a week to find out the results.

digerd Sun 24-Feb-13 08:29:15

Good luck with the results.

flow4 Sun 24-Feb-13 11:41:05

I'm also 'sub-clinical', with symptoms and results that are (usually, just) inside the normal range, and am not yet being treated.

I asked the GP for a print-out of all my test results and discovered that the top end of the normal TSH range has changed from 4.0 to 4.5 - and my tests have all shown levels above 4, but not necessarily above 4.5 - though my highest was 7.something! In the US, the top end of the normal range is 3.5, and it may soon be dropped to 2.5 ( Wiki info ) confused It all does my head in a bit!

But Beryl, along the way I have also been tested for iron/ferritin and vitamin D levels, and discovered I was anaemic and vit D insufficient. I have been taking supplements for these for the past 2-3 months, and my exhaustion is lifting - I feel quite a bit better - still tired, but not deathly tired any more! I reckon it'd be worth you checking too...

BerylStreep Fri 01-Mar-13 16:15:08

Well, I got my results today. Drat, my thyroid is normal.

T3 was 13.3 (lower end of range is 11). My GP showed me all my thyroid tests over the last 5 years, and they my T4(?) results were 11.1, 13.8, 14.2 and today, 13.3. TSH levels range from about 2 - 3.5.

Blood count was good, at 14, however, my iron stores are low so she has put me on iron tablets.

The good thing is that I really feel my GP is listening to me. She said that all of my symptoms point to being hypothyroid. She is going to test for coeliac, and also thyroid antibodies, as well as re-test my iron in 5 weeks.

Strangely, we discussed diet, and she said to eat lots of red meat and green veg. I already do - I eat lots of red meat, and have spinach on a daily basis, as well as loads of savoy cabbage. So it is a bit weird to have low iron stores.

Anyhow, please excuse all the numbers - I sort of wanted to get them down so that I have a record and don't forget.

RockinD Fri 01-Mar-13 18:08:56

So, your TSH is shifting between about 2 and about 3.5. Is there an upward trend? It should be around 1, so it is already slightly raised.

If your range for FT4 starts at 11, your results have always been in the bottom half of the range, when it should be in the top quarter.

You are definitely well on the way to being hypo, which would explain the low iron stores as well. Any idea how low they were?

Important to get the antibodies checked - that should clinch it.

vertex Fri 01-Mar-13 18:17:42

If you are hypo then your GP will probably prescribe levy thyroxin ( starting at a low dose) and monitor you regularly thereafter. Highly likely dose age will be increased and once your levels stabilise then twice yearly monitoring thereafter.

Hypothyroidism does not always turn out to be a permanent condition and quite often a patient's level will stabilise after time and so dose age can be reduced until such time as medication is no longer required.

Good luck

BerylStreep Fri 01-Mar-13 18:58:05

I can't remember the iron levels - what should they be?

duende Fri 01-Mar-13 21:43:27

beryl I'm hypothyroid and when my ths is 3.5 I feel dreadful. When I was diagnosed it was 8. Since then, have felt the best when it was around 1.

I also have low ferritin which often goes hand in hand with underactive thyroid and also makes you feel tired, cold, causes hair loss, etc.

Oh the joys! It took about 6months of supplementing iron (3 times a day) before my hair stopped falling out in clumps and I started feeling a bit more human.

awaynboilyurheid Fri 01-Mar-13 22:52:33

Another one Beryl with all the symptoms especially terrible fatigue ,have done lots of research, since mum is hypo thyroid but blood tests all normal and although GP referred me to them the hospital have refused to see me as I am still within normal levels .
I read somewhere that some people have normal high thyroid levels, probably me as I am always on the go, well I was till now , but when they those levels drop for whatever reason symptoms appear yet they can still be technically within normal limits but that is low for that person therefore they have all the symptoms, if that makes sense, unfortunately many doctors just go with one set of results and we have to struggle on untreated . Far better if you find a dr to try out a low dose and see if that improves your symptoms unfortunately not many will.

BerylStreep Thu 14-Mar-13 23:46:52

Well, a bit of an update.

I think I feel marginally better taking the iron tablets. I am also quite frankly amazed that anyone's poos can be quite so black.

I have since had thyroid antibodies and a coeliac screen done, both of which have come back 'satisfactory', which I assume is negative, however my Mum is confirmed coeliac and her blood tests showed negative too.

I am currently suffering from a completely unexplained outbreak of multiple chilblains, which my podiatrist (who is also hypothyroid) has previously said he thinks is a symptom of me being hypothyroid.

Anyhow, I am trying to focus on being wheat free, and I am now on day 3 or thereabouts - I am hoping that will help a bit.

BerylStreep Fri 25-Apr-14 11:22:32

Sorry for resurrecting an old thread, but I have just made yet an another appointment with the GP to discuss my thyroid, and I wanted to keep all my posts in one place, mainly to act as a bit of a diary for myself.

I have been struggling for months. So, so, tired, like a blanket of tiredness that hits you in the chest. I sleep for at least 10 - 10 1/2 hours a night, and have no energy. No libido (haven't had for at least 5 years), and generally feel shit. Have put on at least a stone in weight.

I went to the GP in December, and she said she thought I should exercise more, although I find it hard because I feel so exhausted - I do try to cycle though.

I have so many things that need doing, but I just find myself feeling meh, and never getting the motivation to do it.

Anyhow, here's hoping I can pursued the GP to test my thyroid levels again. Anyone else going through similar?

readmylips1 Fri 25-Apr-14 13:12:29

I think thyroid levels are so individual. As someone posted, they feel rubbish when tsh is 3.5. I was diagnosed with TSH of 40 and did not feel unwell at all. Now I feel crap if I am under 4. I much prefer to run at about 5 or 6, much to the chagrin of my GP. It just shows how different ppl react with their levels.

I hope you get sorted.

toodles Fri 25-Apr-14 13:22:19

If you don't mind going private, and you're in his area, you could maybe make an appointment with this doctor who is based in Birmingham. He doesn't look at the test results alone. Takes all factors into consideration.

Dr. Skinner

I hope your GP can help, it sounds miserable.

I can't advise on thyroid, but if it all comes up negative it might be worth asking for a sleep study to check for any underlying sleep disorders. The symptoms of chronic sleep deprivation (exhaustion, weight gain, low immune, poor skin/tissue repair, water retention, loss of libido, muscle aches, depression, anxiety, menstrual irregularities, difficulty controlling body temperature) tally with some of your symptoms.

I hope you get it sorted.

fivecupsoftea Fri 25-Apr-14 14:34:48

I can identify with the title of your thread - I used to hope that this was the explanation for my heatlh problems. Like you my tests came back 'ok' I've gone on a really healthy eating diet - no sugar, no gluten, no dairy, no soy, no caffeine, no alcohol, lots of vegetables, nuts, seeds, fish, quinoi. I'm starting to feel like myself again, which is absolutely wonderful. I can recomend some good books: Mind over medicine, Crazy Sexy Diet and The Wahls Protocol.

Hope you get some resolution, you sound like you are feeling rotten.

awaynboilyurheid Fri 25-Apr-14 19:31:30

Took me months to get diagnosed too would ask for print out and go online, lots of tests for thyroid can be so called normal but in fact if you are in lower end of normal it means you will feel il, l unfortunately there is a lot of ignorance out their and I include GP's in this , your results do sound hypo.

Tardigrade Fri 25-Apr-14 21:39:00

I'm sorry you feel so awful - and know what it feels like to feel so awful and hope for there to be something easily 'fixable' wrong.

Have you had your B12 levels checked? B12 deficiency causes a whole range of physical and psychological weirdness!

Hope you get some positive help & feel better soon.

mercibucket Fri 25-Apr-14 22:04:29

you can also pay for private thyroid tests if you want to keep an eye on levels

PoshPenny Fri 25-Apr-14 22:30:33

am going through same thing as you OP. my GPs parting comment at my last visit was I was reading too much rubbish about thyroid on the internet. the blood tests he was prepared to authorise (which did not include ferritin which had managed to get up to 38 or so by beginning of February from 12 last July) all came back as satisfactory no further action apart from TPo antibody test which Has not come back yet. it absolutely sucks it really does. I have so much better things to do with my limited energy than keep going back to visit my GP and keep repeating myself month after month, year after year...

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