Lost and confused =(

Hi everyone....I'm a 29 year old mother of 2 and I have recently been diagnosed with hypothyroidism following the birth of my 2nd child. My life has taken a nose dive and I am so lost and confused I'm hoping that I might get some clarity & guidance from the knowledgeable people on here.

Following the birth of my daughter in October 2012 I paid a weekly visit to my gp complaining about my health and i was always sent home with a pat on the back with the same "diagnosis" of baby blues. I knew 100% i had NOT got post natal depression - yes i was a little depressed because my body was not allowing me to be the mother i wanted to be - but i did not have post natal depression. But i didn't feel confident enough to challenge my gp - was this post natal depression????!!!! Then in Feb of this year a new gp joined the medical centre i attend and she asked me to list my symptoms..."how long have you got???" was my reply. She really listened to me and took some blood samples, sent them off and told me she would be in touch.

A few days later, i got a call from my gp asking me to come in for a chat...i was petrified. So when she said "congratulations you're not going mad you have an underactive thyroid" i was just relieved it was "nothing serious". I really didn't have a clue what hypothyroidism was but she didn't say cancer so it can't be that bad right???? My levels (i now know) where off the scale - TSH was greater then 150 and couldn't be read and my T4 was 2.5 - no wonder i felt like death warmed up.

I was started on 75mg of Levo and told to come back in 6 weeks for either bloods etc and possibly a higher dose of levo. I was back 4 days later, i had never felt so sick. I not only ticked every box on the hypo symptoms list, i now had this anxious shakey feeling to contend with???? So, my gp lowered my levo to 50mg saying it was too much too soon which made sense to me. For a week or two i felt pretty amazing - i actually cleaned my house and stayed up to watch the 9 o'clock news go me =)

Then, as if out of nowhere, i felt as if i had been hit by a train - literally. But again this anxious feeling came over me, something i have never felt in my life. My throat felt tight, like there was something stuck in it. When i lay down to sleep my heart felt like it was jumping all over my body - the fear that it was just going to stop beating would overcome me. I would start shaking inwardly, feel like i was going to be sick, i would start peeing LOADS (sorry for tmi) and feel as if i was going to just loose all body control. THEN i would panic - i would only panic as a result of the symptoms i was having.

Again, back and forth to my gp - more bloods TSH 79 T4 8 still all over the place but heading in the right direction thankfully. But my symptoms just seemed to be getting more intense. Until last week i had enough - i decided i couldn't cope with feeling like i was going to collapse all the time. Under the advice of my gp i paid a visit to the a&e dept. It was probably the most pointless thing i have ever done - i spent a night on a trolley with no sleep to basically be told that it was anxiety and i should try calm down. I was told to up my levo to 100mg.

So here i am - on 100mg of levo. Energy levels are up that's a plus. But i am unable to get passed this feeling like i am going to collapse all the time...its the "i just jumped out of bed too quick" feeling but more intense and all the time =/ Is this normal???? I am due to meet with an endocrinologist on the 27th of this month and i would love some advice as to what to say or ask him.i cannot live like this and i certainly couldn't handle being told its anxiety again. I have NEVER suffered from anything like this until being diagnosed & medicated for hypo. Is this "what happens" or should i be concerned????

Thank you all for reading my "novel" lol - all advice greatly appreciated

Many thanks

10 Replies

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  • Hi hazeljane - welcome but sorry you're here.

    Yep this is what happens until you get the correct dose for you (sorry) it's possible Levo doesn't suit you but that is what they start treatment with, but there are alternatives. I was told it was anxiety too - but I found out it wasn't in my head - it was in my neck. Bet it all got blamed on being a mum? But yes pregnancy is a big strain on the body!

    If it's hashimotos (probable if hypo) then you'll get ups and downs as it's autoimmune, you can ask for a TPO Ab test to confirm this.

    Other things which may help are sorting out deficiencies - the Thyroid affects metabolism, slowing it down which also includes your stomach and absorption of nutrients like iron, ferritin, folate, B12 and Vitamin D - so you need to get these checked and sorted for starters.

    Hope this helps a little! Jane :D x

  • Oh and the endo should be able to order more tests e.g. FT4 FT3 and antibodies T3 is the actual thyroid hormone available for use - get your numbers and ranges for folks to help further - T4 8 is confusing without the range - but your high TSH definitely indicates that your pituitary is telling your Thyroid to produce more hormone. J x

  • Hi spareribs thanks for your reply =) My T4 I read wrong sorry...the lab results read "T4 free 13.1 pmol/L 8.5-23" dies that make any sense to you????? My hypo is autoimmune my doc ran tests...i also have "weak positive" parietal cell abs which I think is my b12???? They also ran an antinuclear factor and the result was "speckled pattern positive to titre 1:320" they've sent the sample off for further testing...im not sure what that means tho...=/

  • Oops *does not dies lol

  • Dear HazelJane, are you sure it's just hypothyroidism and not a more generalized pituitary problem? 'Peeing loads' can sometimes be a symptom of diabetes insipidus, which is caused by ADH deficiency due to damage to the posterior part of the pituitary gland. Obviously your pituitary can produce TSH, which is good news, but that doesn't mean the rest of your pituitary is working - often some functions can be damaged while others remain intact. You may have deficiency in ACTH which stimulates the adrenals, you may also have growth hormone deficiency or deficiency in LH and FSH which stimulate sexual desire and fertility.

    Anybody reading my posts will know I always harp on one theme, which is that unrecognized hypopituitarism sufferers are often misdiagnosed with fibromyalgia and chronic fatigue syndrome, or just partially diagnosed with thyroid problems when there is much more to the picture than that. The reason I know this is that a third of head injury survivors have hypopituitarism - (google for the evidence) - and there is a big gap between the cases we know must be there, (i.e. about 30,000 a year) and the cases actually diagnosed (2,000 a year). And head injury isn't by any means the only cause of pituitary problems - haemorrhaging during childbirth can cause it too. So where are all those extra cases hidden? Several people have told me they've been finally diagnosed with hypopituitarism after being told it's all in their heads . . so suspicion points to the CFS/ME/fibromyalgia/hypothyroid spectrum. So if your symptoms persist do please get yourself checked out - and don't accept a normal result for the short synacthen test, this test is flawed, you need the insulin stress test (the gold standard) or the glucagon stimulation test, or the GHRH + arginine test.

    All the best, Joanna

  • Hi hazel jane -well certainly low B12 would affect your ability to absorb the thyroid hormones from the blood stream. So any doubts on that score means they need to treat you with B12 injections. If you are not absorbing your thyroid meds well you will indeed get anxiety and sense of collapsing, feeling jittery.

    Make sure you get a copy of your B12 blood test with ranges as NHS will allow you to be much lower on the B12 level than most people feel well on. it does sound like they are picking up on your B12 which is good.

    If B12 id a problem then i can heartily recommend the Pernicious Anemia Society -who are a font of knowledge and support for the small sum of £20 to join.

  • Oh -just in case i am misleading in any way. I am suggesting b12 as well as your thyroid meds -not B12 instead of your thyroid meds.... xx

  • That sounds horrible. I actually had lots of problems getting on thyroxine (my TSH was 79 and I'd been very ill but undiagnosed for years). They started me on 25 mcg because if you've been hypo for a long time it can stress your heart to suddenly take a big dose and if I took about half of it my hypo symptoms improved quite a bit, but if I took more I felt terrible. At the same sort of time I found out I had a magnesium deficiency and started addressing that and at some point I was able to take more thyroxine and build up my dose until I felt well. I felt pretty good for years but recently found I had a reverse T3 problem. Don't bother looking that up! I only mention it because the advice is to come of thyroxine and start taking small doses of T3 and building them up and wait a few weeks for the reverse T3 to be excreted from the body. But I had problems increasing my T3 dose and now I've switched to natural desiccated thyroid and I'm basically having the same problem I had getting onto thyroxine in the first place! I take more, I feel great for about 3 days, then I get a horrible adrenaline rush, can't eat, can't sleep, feel breathless, and it goes on for days. As soon as that happened I would drop back to taking much less NDT and end up back where I started. I have a lovely private doctor and he says he hasn't encountered this exact problem before but that lots of his patients take time to adjust to an increase in thyroid hormone. I'm increasing what I'm taking by 1/8 tablet every 5 days and so far it seems to be going well. He thinks that the increased thyroid hormone causes my adrenals to produce adrenaline for some reason. In my case I did manage to get to a decent level of thyroxine and it did make me feel well, so there's a good chance that your symptoms will settle down. There are also other things that could be getting in the way of your body using the thyroid hormone properly, such as anaemia (quite likely if you've had a baby recently) and low blood sugar (best not to go more than 3 or 4 hours between meals - I was very disorganised and couldn't find time to eat when my little girl was a baby!), and general lack of nutrients (I did very well on Biocare's adult multivitamin and mineral tablets). I really hope you feel better soon.

  • I had almost identical problems after the birth of my third child four years ago. It took 2 years to discover that although I had a thyroid problem, the other problems I had was aerial exhaustion. If your adrenals don't work properly you can't convert the t4. From my experience you won't get any help from your gp. Dr peatfield is the man you need. I am now on natural thyroid and adrenal supplements and am almost totally well again. Still have some tired days but that seems to be standard with thyroid issues. Nutritional support has also been pistol in my recooperation . Dr peatfield really us who you need. Gps will not even admit that these adrenal problems exist, but they actually need addressing first. They are the cause of the anxiety and panicing . I really do sympathise . You are not mad!! You can get better!!

  • To you all who commented here...thank you very much and apologies for the long delay in replying. Life for me is still the same. Hence the reason I am back here looking for advice and just re posted. I would really appreciate any advice you can give thank you :)

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