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

Sounds as if you might be taking too much thyroxine?

I would go back to the doctor.

I had overactive thyroid 20 yrs ago, lost loads of weight but couldn't stop eating, then when I was put on medication got really fat.

Had surgery to correct it, have been fine ever since.

But you have my sympathy, I do remember feeling really weird when it was not all working properly.

Thanks Sophy for the reply. To be honest I thought that I was taking too much and the GP even agreed with me and said to go down to 75. I phoned the endo and he would'nt let me do it. I am seeing the endo next Monday so hope to find out if the dose is too high. I really hope that is what it is as that can be quite easliy sorted. Really glad that yours is sorted, shows there is light at the end of the tunnel

Hi, I was diagnosed with subclinical hypothyroidism last month and was put on 50mg thyroxine (due to having symptoms and a history of recurrent m/c). Feel a lot better and TSH has come down from 6.8 to 3.8 within 6 weeks. Don't feel completely back to normal but much better. Hope your levels stabilise soon.

Hi I've got a hypo thyroid, it sounds like your dosage isn't right. Did you start at 100? If so that might be a problem I was told that you have to gradually build up to a dose. My TSH levels were ridiculously off but I still started on 50 and then built up.

My GP didn't refer me though, just prescirbed it himself. Make sure you get 3 monthly blood tests btw.

Oh and you will feel better! It is a horrible feeling though I know. At least its been diagnosed and can be sorted out (even though its a bit shocking to realise you might well be on medication for the rest of your life!)

Hi
I had an overactive thyroid, then underactive after treatment. It takes around 6 weeks before your body feels the full effect of your thyroxine dose so you may need to wait a bit longer before thinking about changing the dose. I am now on 175mg (I have no thyroid left at all) but it has taken around a year to get my dose just right.

Hello, sorry for not responding sooner. Thanks so much for replies. I am so looking forward to the six-week mark; I have actually felt a lot better today but not completely back to normal. I can't believe how horrid some of the symptoms are, I have found that my arms and legs feel really week and then I get these funny sort of waves of doom/anxiety, its really weird. I have never had anything like this before I had no idea that a dodgy thyroid can make you feel so rough. I started on 50mg for 10days then went up to 100mg, the problems really seem to have started since went up to 100mg. I am trying not to focus on it too much but it?s so difficult when you feel so odd. Anyway its really good to hear from others who have been through this and who are feeling better now. I am seeing the endo on Monday to find out what is going on as it will be six weeks. I really think that there should be more info for pregnant women about the thyroid problems. I had never heard of it before but it does seem to be really common. Its terrible to think that lots of women may be convinced that they have PND when in fact its just their thyroids!!!!!

Also Ladylush, i'm so sorry that you have had such a terrible time and that it was not diagnosed sooner. From my extensive internet research ( I have googled it to death) and from reading loads of threads it seems that fixing the thyroid really does sort the fertility issue.

Hello Yes, you are right. I googled to death as well and was astounded that it had not been checked, yet I had been seen at recurrent m/c clinic and had invasive tests. Waste of money, time and babies I asked for the TFT myself. It does sound as if your dose was increased too quickly. I did not think 50 would be enough for me but in the final week before blood test I started to feel much better and the results show thyroxine now within range. If I get pregnant (no, think positively....when I get pregnant)again I will ask for it to be increased because I know what the levels should be during pregnancy.

i have taken 150mcg of thyroxine for the last 16 years - i well remember how bloody terrible i felt before diagnosis - i even told my mum that 'when i'm dead will you make sure the post mortum finds out what i died of'(at first i too was told its pnd, have a pill and bugger off )

i promise that you will get better, i found a diary of symtoms helped when seeing the doc, as 3 months can seem a long time to remember how you've been reacting to the dosage. also, watch for other symptoms, such as spotty/dry skin, poor hair/nail condition

good luck

I had a flaky scalp and scaly skin which has now gone since starting thyroxine. Also terrible lethargy and bloating. Still feel a bit tired but bloating gone. Hair now shiny and fuller again (was dry, dull and very tangly - which is also a symptom of hypothyroidism). Was exercising but not losing any weight/inches. Too early to say whether this has changed, but I sure hope it does.

God it's so nice to hear other peoples experiences. I think that it is a condition that you cannot possibly explain or understand unless you have experienced it. Maybe that is why the doctors always seem a bit lethargic about it. I suppose also that they know that it can be treated so the symptoms are really not that important to them. I have been thinking about keeping a diary as there does seem to be so many odd symptoms that change daily. I know that when I see the endo on Monday I won't manage to tell him what I want and that I will probably leave more muddled that when I arrived .Ladylush although you had to go through huge pain and sorrow to get there at least you have been very thoroughly checked out and the cause has now been found. You will get pregnant as milions and ,millions of women on thyroxine do! If you think that between 10-16% of women develop a thyroid problem post pregnancy and 10% of the population have a thyroid condition it makes you realise just how common it is!

That's a great idea to keep a diary. I also forget things and get flustered when I see doctors (bit stupid, given that I'm a nurse!)so I find it useful to type some notes/objectives so that I get the most out of the appointment. You are right - it is good to know what the problem is. I suppose I'm just disappointed that I had to ask for it myself. I think it should be a first line investigation for recurrent m/c not least because it is so cheap and easy to test but also because it is easy to treat and could avoid unnecessary m/c. My gp has been great though. I went armed with a barrage of info thinking she wouldn't treat me and she just smiled and said "ok I agree"

hi thumbellina, have scrolled over to your thread now
why was it that your initial dose was upped from 50 to 100mcg? those symptoms that you describe might very well be caused by having too much thyroxine, so it could be that you need to go to 75mcg... even tiny differences in dose may make a huge difference to how you feel. personally i appear to be very sensitive to slight dose changes: until recently i used to be on alternating 75 and 100mcg, as according to gp my ideal dose was somewhere in between, but i ended uo feeling the difference in whether it was a 75-day (felt lousy) or a 100-day (felt fine). now i am on 100mcg daily and am feeling great. it is true though that your body needs a little while to get used to your dose, so it might always take a while before you feel any effect, as offa already mentioned.
hope you feel better soon! it is amazing how many of us there are on mumsnet!

Haven't had time to read the whole thread as should be cooking dinner but I got diagnosed 2 yeras ago underactive. Started out on 50mcg. Going from nothing to 50mcg did make me feel very anxious and panicky- very big waves of doom; lost lots of weight . Horrid. It takes a while for the body to get used to the new levels, even if they are still saying you're underactive. have to build you up gradually. 100 mcg might be too much to start with. I go to the Endocrine and Diabetes Dept at St. Thomas's hospital and ther is one doctor who explained t all and was lovely. Gotta go but weill post later with his name.

I also got achy joints. The thyroid is a wierd one; it causes all sorts of stuff. The time I went all overanxious and panicky was HORRIBLE. Really anoyed my whole family as well as I was ranting and sobbing

Thankyou all for your feedback. Its so good to get some suppport. Peasoup it's very interesting to hear that you too had the waves of gool and anxiety and lost weight. I really don't know why I had to go up to 100mg, I was given a prescription for 50 for ten days then 100 from there on ( my TSH was actually 4.6 so not too high but my t4 was just below the normal range. I had to double the dose on the 24th of Dec, the result of which was I felt terrible all over christmas. I'm really annoyed with the endo to be honest as he did not prepare me at all, he just said "oh you'll be right as rain for Christmas" . Nothing could have been further from the truth!!!! If he had just warned me that it may be a bit up and down it I would have worried less. The only way that I have found out that it can take time to adjust to thyroxine is through the interet and mumsnet (thanks girls). I have my next appointment with him tomorrow and am taking DH with me this time for moral support. I find that when I go on my own I am so busy trying to occupy DS that I don't really take on board what he is saying.
Has anyone else been told that they have thyroid antibodies? I had the test done for those and they came back as positive. I think that most people who have thyroid porbs have them but was just wondering if anyone else had any info on them.
Take care all

opps just re-read message meant to write doom not gool!

I do know that thyroid antibodies carry greater risk of fertility problems and m/c. I am awaiting my results and will feel a huge sense of aha if they come back positive. Terrible when you have to diagnose yourself My TSH level was 6.8 and my T4 just in range. TSH now down to 3.8, not sure about T4.

thumbelina..i have Thyroid antibodies and have loads of symptoms of Thyroid probs but doc will not treat as he says TSH was within the range!!!!!!, if I remember it was about 3 ish but they will not test me for t3 and t4. Was your TSH 4.6 when they started to treat you and was this the reason for them treating you or was it because you had thyroid antibodies that they treated you? Did they test your T3 and T4?. Sorry for all the questions but I am at my wits end and feel doctors also just want to treat me for anything else but my thyroid which I feel is at the root of my problems. Thankd for any help and sorry if I have hijacked your thread.

Hello, I think that the antibodies are pretty significant in the treatment of thyroid problems as they indicate that there is an autoimmune process going on and therefore damage. JSo it does sound like you may need treatment, has all this happened after delivering a baby? If so perhaps they are waiting to see if it is a transient post-partum thing, which is actually very common. My TSH was initially much higher and begun to come down on its own accord. It was about 14 but then went down to 4.6. When the TSH was high the T4 was within range. The endo put me on the thyroxin when my TSH was at 4.6 but the T4 was low (sorry can't remember exactly how low) it was just below the bottom of normal. I think that he must of put me on thyroid hormone because of the antibodies and the fact the T4 was low. I will ask why in the morning. I don't understand why they are not looking at you T4 JSo, is your GP dealing with it or is it a specialist? If you are symptomatic and you have antibodies it would make sense to test your T4 surely? When will you find out about your antibodies ladylush? From my research ?( obsessive googling again sorry) it would appear that antibodies can be a problem but that thyroid hormone replacement can fix it.

JSo, I can understand your frustration at GP's refusal to help/treat you. Whenever my TSH is over 2-2.5 I start feeling sluggish and brain-fogged.

Strangely enough, there is a difference in what the gp-s and the specialists take as upper and lower TSH limits: GPs use 4 as upper limit, whilst endocrinologists think really it should be below 2. In other words, with your TSH value, if you would be referred to the specialists they would put you on thyroxine right away. Could you try to get referral? How did you find out about the antibodies, could you use that as an excuse to be referred???

I was told at my last blood test that usually labs only test TSH initially, and only if this value is outside limits they test free T4 and/or T3.

About the antibodies: I also have thyroid (peroxidase) antibodies. I was told that my having these may have been a result of a disease called postpartum thyroiditis. Apparently this is quite common (if I recall as many as 1 in 10 women), where after giving birth your body starts attacking the thyroid gland. Not in all women this results in permanent damage to the thyroid gland, but from having discussions with other "victims" on mumsnet it has become clear to me that in many it does, and symptoms can be mild or mad. Probably also depending on how clever your mw/gp/hv is in picking up on your symptoms, and telling them apart from postnatal depression.

Anyway, dh just told me dinner is done and on the table, so I'd better go and eat! Yum!

I think I get them in a couple of weeks. Yes, I'm optimistic now that I'm on Thyroxine and I do feel a lot better. Thank god for Google and mumsnet!

j20 - maybe if you arm yourself with some research, the gp might relent? It is frustrating isn't it. For instance, for women trying to conceive the TSH levels should be less than 2 and yet the upper limit of the reference range is 3 above that.

Oops - it's Jso not J20

thyroxin will treat your THS/T4 levels, but won't fix the problems with antibodies.

if you are planning/hoping to get pregnant ladylush, i would discuss with your gp how they are thinking of managing you during.
i went to endocrinology clinic during my second pregnancy, and tsh and t4 levels plus my anti-thyroid peroxidase antibody levels were monitored closely during my pregnancy. ds2 after birth was supposed to have had his cord blood tested (for transferance of my antibodies into his blood, as some have shown to cross the placenta), but there was a huge fire in the computer server that held all computer records for our local hospitals when he was born, and in the mixup/mess this was missed, and the test was not done. he did get tested when he was about 10 wks old.
i think the problem with antibodies passing the placenta is bigger in women with graves disease (hyperthyroid), and anti-TSH receptor antibodies.

anyway, this all on the side...
during pregnancy TSH should be below 2 as well, and i think it's just ridiculous that gp-s have other upper limits (googled and it seems that some think below 5 is fine )

reading your story, ladylush, i wouldn't be surprised if they do come back with positive for self antibodies... it is super-frustrating that sometimes you need to diagnose yourself!