Thyroid problems just diagnosed want to chat to others with thyroid problems, looking for solidarity

[thumbellina]

Hello, found out that my thyroid has gone loopy 3months ago. Have been on 100mg of thyroxine for the last 4weeks and am still felling like cr*p. I just wanted to know if anyone else had experinced panic attack and wierd anxiety problems after starting the meds. Also in the mornings my arms and legs feel really weak and heavy. All this seems to have started since I started the thyroxine. It's just been a nightmare I had a really normal easy pregnancy and delivery and first six months with my fantastic DS. Life just recently has become unbearable, I don't feel like I am ever going to get better. I can get any sense out of the GP and the endo is so aloof and uninterested in any side effects I may be having. I have also lost shedloads of weight which is not normal for an underactive thyroid although it was overactive for a bit I think before it went underactive. I just want to know that this is going to improve as at the moment it feels like a never ending nightmare. Sorry such a moany message. Would love to hear any other experiences. Thankyou

Hi Thumbelina, Honeybunny and lady lush..thankyou all for replying to my post..i am so frustrated but your encouraging posts has made me realise that i need to be a bit more assertive with my GP. My last baby was delivered in summer of 05 so Antibodies still present and always has been in the last 5 years or so. thumbelina i have quite a few Autoimmune disease's so am under a specialist consulatant for one of these which is where the thyroid problem rises at every appointment but he tells me he cannot deal with that and writes to my GP for "Serious Treatment"..but Gp just tests TSH..every time and it is within his normal range and he does nothing..then next consultant appoinment who checks bloods...same thing all the time..so I am very stressed..all the time with awful joint pain, tiredness, brain fog, , more sleepiness, headaches, hairloss, low blood count to name a few...the list goes on but we all know the symptoms. I am gonna ring doc in the morning and demand t3 and t4 tests and some answers. YOu have all been great in helping me have the courage to ring the doc .....will be in touch when I get an appointment and fill you all in on what is happening...thankyou thankyou thankyou Lady lush Thumbelina and honeybunny..you have helped me more thatn you will ever know

Thanks honney - I must admit that I haven't done too much reading on the antibodies cos I thought I'd cross that bridge when I get to it, but you saying that the thyroxine won't help is interesting. I think I'll ask for endocrinology referral as soon (if/when) I get pregnant.

Good luck with the gp Jso. My tip would be for you to type a letter with your request on it (citing some references if possible). They can't brush off a letter imo - well maybe they can.....but the point is that there is a paper trail and they will have to show that they have acted in your best interests.

Hi Ladylush..thanks for the reply, so geared up now to go to docs armed with more info...will let you know how i get on..trying to get an appointment on line..but server playing up so hopefully will get one before tomorrow sometime..will keep yo all informed but hopefully I will not leave teh docs without a test for t3 or t4 at the very least. :0

Good luck

That is interesting JSo, that you also have several autoimmune diseases. Apparently, once you have one youare likely to have another. I have autoimmune hives, which are very annoying, as they come up after having a cold, or when my immune system is down for one reason or another, and whenever my thyroid is out of control. After walking around with this for years, wondering what on earth in my food was triggering my hives, it was a specialist at my allergy clinic who diagnosed this. He also mentioned that other things you are likely to have is anemia (esp. during pregnancy!), and other autoimmune diseases.
I hope you get referred, JSo, I'll keep fingers crossed for you!! Good luck!

Honeybunny I never realised hives where autoimmune..cos I have always believed oranges brought me out in Hives and some other foods from your post I think I have another autoimmune now ..I always thought it was food too.
Got my docs appointment for 2.40 tomorrow so will keep you all informed of what she says. Writing everything down that I want to say so I dont forget....cos I have got a terrible memory.

Mu underactive thryroid appeared following birth of my DS 2 years ago. It's taken me till just recently to get it properly explained to me by the consultant at St Thomas'. Up till then everyone made it sound so easy - take the tablets and you'll feel better but actually I felt worse- anxiety gloom weightloss. I phoned a thryoid supporrt group and they asked me to ask my consultant for the copies of all my test results over the past two years then phone them up with all the info and they'd advise me wjhat t ask the consultant to do. I went in to get my bloods done and asked for copies of all my records tp do wit the thyroid treatment and the test results and suddenly I was ushered into the head consultants office (who I'd never seen before) and I didn't even have an appointment and he spent 40 min with me drawing diagrams and explaining it. It was the first time anyone had said that the anxiety panic etc was due to the switch to a higher level than I was used to evn though it didn't even get me back to normal level, let alone get me overactive. I just thoguth it had sent me overactive as I was feeling so tense but when tests came back as underactive I just thought I was mad, havin a nervous breakdown. So remiss of them not to warn us!! So it's worth aking all assertive. Also totally bypass your GP and get yourself refered to hospital dept. Also call the helpline, support group. Sorry am rambling but have toddler tryiong to get me to play with him; better go play. Good luck!

sorry JSo, what i meant to say was that my hives turned out to be autoimmune. other -more common- causes are allergies and as postviral rash. i never realised though that they could be autoimmune as well. am not entirely sure how it works. just that for years i have thought that mine were food related, and i was referred to alergy clinic twice and only the second time it was picked up.
hope things will work out for you at the appointment tomorrow!

Hello, all hope you are all well. Just wanted to update you on what happened at the 6-week check with the endo today. The good news is that all the bloods are back to normal TSH 1.2. He thinks that I should be fine on 100mg and does not want to see me for six months. I tried to discuss with him some of my symptoms i.e. weight loss anxiety etc etc. He basically told me that I probably had some sort of anxiety disorder as a result of having recently had a baby!!!!!!! Luckily my DH was with me this time and backed me up when I protested that I did not think the symptoms had been in my head and that I really have never ever suffered from anxiety before. It?s so weird the endo seems to completely disregard anxiety as being associated with thyroid problems but it sooooo is. Anyway the long and short of it is that the bloods are back to normal and so that?s good. I did ask him about the antibodies and if they could cause problems in pregnancy. He told me that as long as the thyroid is being treated the antibodies are not a problem. He did say that the ones that stimulate the thyroid can be a bit more of a problem in pregnancy but that the other sort peroxidase were ok and that he had never had a patient who had them have a problem in pregnancy. I think the key is to get the thyroid sorted. When I asked whether the antibodies reduce over time he said they may or may not but that this was irrelevant, as the level does not matter and antibodies can hang around and not do any harm. It would seem that its really after pregnancy following a period of immunosupression that they tend to kick off. Honneybunny, did your DS have the antibodies when tested? or did it never get done? Peasoup, are you feeling better now that your body has adjusted to the dose or did they have to alter it? Jso hope you got on ok at the docs today. Must dash and make dinner bon appetit all

I feel alot better now. we upped my dose gradually. They told me recently I should go up another 25 mcg but I'm a bit scared to in case I go all anxious again. I couldn't bear that. I'll wait till I'm feeling ultra calm then up it maybe by 25 every other day then increase it to 25 every day once I'm feeling level. What the doctors NEVER mentioned to me, but what the support group told me, was that caffeine can stop the throxine being absorbed, so have your tablet in the morning then wait at least an hour before having a cuppa to allow it to be absorbed. Also don't eat for an hour after taking the pil. It's a bit of a pain cos I want to get up and have breakfast and tea straight away but I just neck it as soon as I wake then wait an hour. Also I was taking a multi vitamin every morning (Berucca) to try and give myself some get up and go, but the support group told me iron stops the absorbtion of thyroxine as well, so if the vitamin contains iron it would have been stopping me absorbing the thyroxine. No wonder I wasn't feeling better as I was getting up, taking the thyroxine then the Berrucca (which contains iron) then having a cup of T and breakfast! Why don't doctors mention this?!

thum - glad your results are normal now. Strange that the endo dismisses thyroxine causing the anxiety

Peasoup - glad you're feeling better too.

I'm going to the gp on thurs to request an increase. I'd like my levels to be under 2 ideally.

Peasoup - ikwym about the drs not telling you about caffeine and iron. I read it myself before being diagnosed so I had an advantage. I think they should put something on the packet or at least make it clear in the information leaflet that comes with the tablets.

Hello, Peasoup and Ladylush Thanks for the replies. Thanks also for the tips on how to take the drugs. I always have a cup of tea just after had no idea. I'm going to start having hot water and lemon first thing instead which is ohso trendy and healthy. Sooo pleased that your dose is sorted now peasoup. I am also pleased that the medics accepted that the thyroxin can cause some of the symptoms discussed. It would make sense that adding a hormone to your body would cause some disturbance. I now feel a lot better than I did and the weakness in my arms and legs seems to have gone . I am still getting a bit of anxiety but it is less. I seem to get it at the end of the day when stop for the evening. It's so much milder than it was so just hope that it goes away for good soon. I still can't believe what a shocker the whole thyroid thing has been and just how odd it can make you feel. I had no idea!!!! I'm so worried that all the symptoms will return which is silly I know and probably not helping the anxiety. Ladylush you really should get them to get you to a TSH below 2, I?m sure if you see an endo this will be done. You are within your rights to demand a referral (I did) despite my GP telling me that it was not necessary. Good luck

Thanks for the tip - I will demand a referral when I am pg or if dr doesn't up my Thyroxine.

Hi all..sorry not been able to post sooner but computer crashed on tuesday night and hubby ony jsut got it sorted late last night. Anyway doctor was really sympathetic but would not hear of treating my thyroid she says because I have other automimmune diseases a lot of my symptoms are from them ie: coldness tirdness itchy skin hairloss etc etc. She has suggested that she is gonna look at all my notes over the years of thyroid and other tests i have had done and write out to me with suggestions and if she thinks I then need a referral for my throid she will definately do it but my last reading was jsut over 3 and she says that needs no treatment as is perfectly normal ..and the antibodies do not mean much either !!!!!. I was happy with this because she is taking it a bit futher or should i say not jsut brushing me off and looking at my symptoms in more detail. Will let you all know what she says in the letter when it arrives. thanks for all your advice and keep healthy

Hi all, just to add my experience:

My mum was seriously ill with underactive thyroid a few years ago. It had probably been undiagnosed for years as she had suffered PND (often a misdiagnosed thyroid prob), depression, had angiograms etc. Now she is on proper medication but she realised a while ago that she had been taking too low a does and the dr's gave her AD's because it sends her into a bit of a depressive spiral. Anyway, her problem is autoimmune and a few years ago I had some blood tests and they discovered I had the bad antibodies as well (it can be hereditary).

After giving birth to DD 7 months ago I developed overactive thryoid. They didn't do anything (nor did I lose any weigh ) as they were convinced it would swing to overactive. It has an now I am on the lowest dose (25 mg) and my last blood test came back that my levels had stabilised (after 2 months on the tablets). I was actually really disappointed because I still feel sooo tired, I dread waking up in the morning as I feel terrible, I just don't feel myself. The dr said "well having a 7 mo baby is tiring" and was no further help. Said come back in 2 months.

So that's where I am now, still very tired and emotional all the time. It's affecting my relationship with DH as I am just vile with lack of sleep.

I hope the rest of you feel better soon

btw, my mum recommends this book

hello
I have Hashimotos syndrom - underactive 'roid - sympathy in spades and lots of empathy too, the zombie feeling is SHITE

you'll be fine on your thyroxene now but do remember to watch your IRON levels, get them tested too if you can

Went to Dr and the anti-bodies results are not back yet. At my request she upped the thyroxine to 75mg as I want the TSH below 2.

Hello all. fellow thyroiders. Well done Lush that is so great that they have listened to you and taken note and J20 sounds like you GP is on the ball which is fantastic, hope you feel better soon. Bumerlicious I feel for you, sound like your GP is being a tad cr@p. It is really annoying when someone tries to palm off thyroid symptoms as just normal tiredness. We all know what tiredness feels like and how we normally feel, we would not be bothering our GP with just normal tiredness it's different. AGGGHH its just so frustrating. Also if your mum has a thyroid condition and you have the antibodies and have gone overactive then under active it looks like you have a thyroid problem that needs proper treatment. My endo told me that 50mg is just a half does and that 100mg is the does that most people are on. Having said that I think that he may be a bit thyroxin trigger happy and dish it out in spades. Hello suzywong, I have read loads of your thyroid threads so know you are a bit of a thyroid guru. I was actually after a bit of advice from someone tonight. Has anyone else found that some days they get waves of anxiety even though their levels are so say normal? I have had been really really dodgy all day today and have felt all over the place. Have been on the thyroxin for 6weeks now and have had days of feeling great but the last two days have been terrible. I am just a bit worried as for the last two weeks about an hour after taking my thyroid pill I have had and sorry for the detail here but a bit of an upset stomach. I have just started wondering if perhaps I am losing the thyroxin whilst having the upset stomach if you get my drift. Has anyone else experienced tummy disturbances shortly after taking their meds and if so did they go away. I can't bear to bother the GP with this again!!

Hi thumbellina - haven't had upset tummy but I have noticed that I am more regular (was constipated before)with a softer consistency Gastric upset is one of the side effects according to the leaflet that comes with the medication. It sounds as if you are quite sensitive to the medication and are getting a few side effects. I hope it resolves itself in time. I haven't felt anxious though I did before starting the treatment. I do still get waves of exhaustion though - feels like the tiredness you get in early pregnancy (I should be so lucky)and today for example I had to crash out for an hour while ds watched tv. I felt bad but he is a good boy and didn't trash the place

Hello there thanks Lush for the reply. I think I must be pretty sensitive to the drugs as I seem to be displaying loads of the symptoms. Rationally I know it will calm down but I am getting so fed up with it all. The problem with this whole thing is that so many of the symptoms could just be due to stress ( although I don't feel that they are). I think I just have to stick it out and wait rather than going to the GP again. Thanks so much for the reply.

Maybe you could try reflexology or acupuncture. Both are holistic treatments and should work fine with the thyroxine. I've tried reflexology and it was very relaxing. Maybe they might help to balance your system a bit and counter some of the negative side effects. I don't know but worth looking into.

Hello ladies, I have an underactive thyroid, which only came up in a blood test I had when I was getting lots of headaches. The GP said I was borderline and that was about 3 years ago - I was started on 25mg of thyroxine, slowly, slowly it's crept up and I'm now up to 175!

My GP is great and if I feel a return of symptoms I just book myself in with the nurse for a blood test and 9 times out of 10 I am right and the levels have gone haywire.