Sorry to post asking this but I need some reassurance that this is the normfor hypothyroidism.
Last summer it started as horrible fatigue that then turned into an off balance walking on a boat feeling. Muscle weakness especially in my thighs. Crippling fatigue, sometimes a low mood, tearful and anxiety. I also have crashes where if I do too much I crash and burn for days with the symptoms I just mentioned and will be in bed poorly. On Saturday I took my daughter out alone to the duck pond for an hour. It was lovely. Sunday I was in bed with crippling fatigue like I'd be drugged with a sleeping tablet. I felt weak and had a horrible dull headache. I call those days a crash.
Day to day I function with medium level fatigue, weakness, brain fog.... but then some days like today it's close to a crash where I feel so exhausted I cannot put it into words and on those days I feel high anxiety and don't go out as I can barely function. It makes me so anxious and this is my problem. I get afraid I will collapse and end up in hospital. It has all been a huge trigger for my anxiety and agoraphobia. I rarely go out alone as I feel so grim.
My tsh last summer was 5.35 (0.35-5.5) and ft4 11 (7-17) gp ignored my fatigue branding me anxious. By January tsh was 6.54 (0.27-4.2) ft4 14.7 (12-22). March tsh 7.51 (0.27-4.2) and ft4 15.8 (12-22). I was tested 2 weeks ago and tsh was 9.28 (0.27-4.2) ft4 15.7 (12-22). Gp prescribed thyroxine 25mg. I've been taking it about 11 days now.
My gp thinks it's all just the hypothyroidism and chronic fatigue syndrome. Can anyone tell me if I'd really feel this bad with levels that I have?
Also someone inboxed me suggesting i have adisons disease. It absolutely terrified me, I have anxiety so please noone inbox me suggesting new things lol!!! So I'm now scared incase it's that as my friends friend crashed her car and died during adisons crisis and it's always been a fear of mine. So the last few days I've been worried what if it's not hypothyroidism.
Sorry I just feel so upset today. It's my sons birthday tomorrow and I don't even feel well enough to bake him a cake never mind take him out tomorrow. He will be 14 and he deserves such a special day. I feel I'm letting him down being so poorly. I also have to face my family who I do not really speak to. My mum and sisters will insist on seeing my son. They cause me great anxiety. My brother attacked my husband and myself 4 years ago and I cut him out my life, my family resent me because he is ill. Since then we barely speaks so seeing them makes me very anxious and makes me dread all my children's birthdays which is a shame.
Sorry to offload. I've been so alone with all this hypothyroidism testing. My gp told me in January I just had cfs as my thyroid results were normal as my antibodies were negative. It's only because of you all here I kept testing. My gp also said you don't need testing first thing in the morning, and it'll be high in most people in the morning. I got my tsh of 9.28 at 7am recently. I've been left dealing with this myself with no support, very ill having to take care of my family. It's been tough. Feeling sorry for myself today and having a little cry. Sorry to post offloading.
Julie I'm no expert myself but can only comment through my own experience of being hypo. Your symptoms sound very familiar to me from the times I have been hypo, and if you can get the right treatment for you then you will feel better than you do now. It is not in your mind, you are not imagining it. Don't despair, keep going in the direction of health, read lots on here and you will find the health and support you need. If you only bake that cake today, you will have done enough, I know how exhausting that is. Others who know a lot more about meds will comment more, take their wisdom an board and move forward one step at a time xx
Your message made me smile. I am.praying I find some strength for tomorrow so I can relax njoy my sons day.
Hypo really is awful. I am just so scared. My doctor hadn't seen me since January and we've only talked over the phone since as I'm too poorly to go into the surgery. I guess I kind of have given up on them as I had to go private to get answers. If I'd listened to them telling me my tsh was normal I'd be getting worse and worse. I just got branded anxious and depressed which is so unfair.
I can resonate with some of the feelings you have such as the "walking on the boat feeling" and muscle weakness and what I would class as chronic fatigue although it doesn't match yours. I am sorry you are going through such hell.
What I can advise you on is the relationship with your family. You were totally within your rights to cease contact with your brother and if your mother and sisters upset you even though they know you are ill that is just not acceptable. You do have the right to take a stand and tell them you are not well not enough to see them. But first and foremost ask your son what he would like to do on his birthday and if you can oblige or comprise then do so.
I totally understand that your ill health is causing your anxiety and you must consider yourself because if you don't who will?
I feel I'm on a boat. My gp says my actual balance is fine and it's not true balance issues or dizziness. It's just I feel woozy inside and like I'm walking on a boat or the floor is bouncing. I've had it 7 months now.
Your doctor is not being very helpful is he? Big big hugs. You are hypothyroid and yes, you can and do feel awful with hypothyroidism. He's started you on too low a dose - he should have started you on 50mcg. And the aim of treatment isn't to get your TSH back into range, it's to get you feeling well again. Many find they need to have a TSH under 1.0 to feel better. Ask for an increase in dose to 50mcg. 25mcg often makes things worse because it can switch off what little thyroid function you had, leaving you feeling worse not better.
Is there another more enlightened doctor in the practice you can see?
Oh and just to say, don't worry about Addison's yet. It's a remote possibility but my money would be on you having developed autoimmune thyroiditis (Hashimoto's) from what you say. Has your doctor ever tested thyroid antibodies? If not, he's nowhere near as smart as he thinks he is... Plus yes, TSH is higher in the morning, but in people with normal thyroid function that means it might be 1.7 instead of 1.6. A TSH of over 3 at any time of day is not normal for most people.
Sorry - just reread and saw your antibodies were normal. But sometimes it takes a few tests for them to show up. Ask for another test.
Other things to consider - have you had Vit B12, ferritin and Vit D tested? All are often very low in hypo folk, and make you feel even worse when they are.
Thank you. My b12 was 212 last summer. It's now at 477 as I supplement. Gp told me 212 was normal. D I've never had tested but I supplement 10000ug a day. Ferritin was 15 last year it's now 34.
No 212 is very low and anything under 500 can cause permanent neurological damage. I'd increase b12 to 5000iu a day sublingual methylcobalamin until your level hits the 900s and then dropback to 1000iu.
Ferritin needs to be at least 70, so that's poor as well. You can buy the same ferrous fumarate that you'd get on prescription in Tesco (and other) pharmacies for £4-5. Needs to be taken with vitamin C and away from levo.
My anxiety had worsened since being hypo for sure.
I take 1000ug a day of b12 but will increase that today.
How far from levo can i take iron? Is it 4 hours after? I take feroglobin which has vitamins in plus 14mg iron and it has increased the ferritin from 15 to 34.
You are possibly exhibiting signs of neuro damage already - walking and balance problems - I used to bang into the wall when climbing stairs and was always tripping over as I couldn't feel my feet properly. I also had a bad under eye tic. But since upping my B12 it has all gone, so don't panic.
When I was taking iron, I took it at lunchtime and dinner time. I think 4 hours away is best.
I think it depends how bad it is and how long it has been gong on for. I need to take 5000iu a day for it to make any difference (and it took several months. The people in the HU Pernicious Anaemia Society group would be better able to advise you. I'd try there; they know all about B12.
Sadly no. He's the best there as all others told me I was being a hypochondriac even when tsh was over 6 so I changed to this gp. He's also the only go that will come to visit me at home if need be.
So true...I had a doctor once, right after I was diagnosed with Hashimoto's disease, who told me (no, he was not joking) that I should not take more than 50 mcg of T4 daily, in order to allow my own thyroid to continue producing whatever it was capable of producing (not much, when your TSH is over 20 at the time of diagnosis), supported by the T4 taken...so yes, there are doctors who are completely ignorant. I can only agree with Jazzw; taking some thyroid hormone will suppress whatever thyroid function you have left, leaving you even more hypothyroid, as your are no longer getting anything from your own thyroid gland, and not enough from the drug...so it's a vicious circle most doctor seem completely unaware of.
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Oh no so that could be why I'm feeling worse suddenly. I was praying I'd start to feel better not worse 😣
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You most likely will, but you need to increase your dose ASAP. Once you reach your maintenance dose (which can be anywhere between 75-200 mcg daily), you will start feeling a lot better, provided T4 drugs only convert enough to T3 in your body. With low free T3 levels you will not feel optimal, as FT3 is the hormone that is active on cellular level, whereas FT4 is known as a storage hormone meant to be converted to the active hormone FT3. So it's important to check FT3 levels as well, even when you are optimally treated (according to doctors) with T4 drugs like levothyroxine, especially if you continue to feel hypothyroid although doctors tell you your treatment is optimal and whatever is wrong with you has nothing to do with your thyroid.
When I started on T4 drugs 15 years ago (and I started on 50 mcg daily), I increased it every six weeks until my TSH dropped below 1.5 (which is what the endocrinologist I was referred to recommended). Today, I know that many hypothyroid patients, especially those with Hashimoto's disease (autoimmune) don't feel well with a TSH above 1. It seems the TSH is what triggers autoimmune activity in the body, thus perpetuating the attack if you try to keep the TSH in range. I personally need a completely suppressed TSH (below 0) to feel optimal.
But don't worry about all that now, just make sure you increase your dose without delay, and try to have your FT3 levels tested, especially once your doctor decides you are "optimally treated".
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Thank you.
My gp has told me they start at 25mg? He was happy to leave me 8 weeks before a blood test!
They don't test ft3 on the nhs here so that's why I go private. My ft3 was 5.6 when my tsh was 6.54 and 7.5. Last test I didn't get ft3 tested. So my t3 was pretty ok, well within range which as about 3.8-6.1.
Thank you for your reply
Julie
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OK, so low FT3 does not seem to be a problem for you right now.
I was told when I started on T4 that 50 mcg is the normal starting dose, and that 25 mcg is usually given to elderly patients with heart disease...but I guess all doctors have their own ideas.
Good luck, and I hope you feel better soon!
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Thank you x
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If you are over 60 they start you at 25. 50 if younger.
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No, the guidelines state a starting dose of 25mcg when over 50 years old regardless of any heart problems.
Your GP is being a silly billy (I'd like to use a different term). Just saying cfs is nonsense, it is not a diagnosis. Most likely hypothyroidism. Make sure your GP gets your TSH down until around 1.0 or lower. If you still feel the same it may not be hypothyroidism. 25 mcg is too little, I'd ask firmly for 50 mcg - that way you can see if it makes a difference. If 50 mcg turns out to be too much it could easily be reduced, 50 mcg is a very safe dose. The TSH is consistently going up showing progressive failure of the thyroid gland. There's no point having the treatment contiunally lagging behind the blood tests (and your symptoms), it just condemns you to ill health and a dreadful life. Try and adopt a friendly and assertive approach. If you can't manage that just be assertive. It might help to take someone to the doctors with you for support. Have an endpoint in mind (e.g. 50 mcg increasing until TSH 1.0 or whatever) and keep the doctor focussed on that.
I have a lot of sympathy for GPs, they have enourmous workloads and have to deal with some terrible situations. It's not their fault, they are 'guided' by endocrinologists and told to ignore patients with a TSH less than 10.0. It is reasonable that they should accept the guidance of specialists. However, until we can knock some intelligence into endocrinologists we have to be firm with our GPs in order to sort out our health.
That's much fear. If it's not hypothyroidism what is it. It's making my anxiety run wild. I feel ill most days and it causes me so much anxiety as I fear hypothyroidism cannot cause how I feel.
I had bloods for every thing in december and all were good. My gp diagnosed stress and anxiety. He said that can make anyone feel physically drained and unwell but it's bene daily for 7 months so I know it's not that and the fact I crash in energy and am bed bound some days proves it. My energy levels are awful so I know it's something and my gp then said seeing my latest results it was hypothyroidism.
Worry about what else it might be if sorting your thyroid doesn't solve the problem. Honestly, many of us were practically bed bound with TSHs lower than yours. Most likely scenario is that it is all due to hypothyroidism. Your B12 could be a bit higher so keep supplementing. And your ferritin at 34 is too low - needs to be 70+ to help your body use the levo you're taking. Some iron tablets wouldn't go amiss. Hang in there, you've found us - we'll do our very best to help you get this sorted. x
I'm so glad I have everyone on here as my anxiety has been terrible throughout this as I've been so afraid. I've developed agoraphobia so my anxiety picks on my health fearing being rushed into hospital etc.. I feel silly as others get ill and don't feel anxious like this.
I'm just worn down. 7 months of feeling this ill and it's getting me down.
I can't take iron tablets as they cause me terrible stomach issues so I take feroglobin liquid that is about 14mg a day and has got my ferritin up a little. Spatone didn't help at all.
I know what you mean about feeling silly, but you shouldn't. It affects every aspect of your life, and I get the agrophobia too, I doesn't help when your aware that you feel so ill that you cant function at home, indoors, let alone outside, doing "normal" stuff, shopping, visiting people, etc
If you were ill with the flu, you would, stay home, rest, and people wouldn't see you until you were feeling well, and that seems to be excepted, but I ask people to imagine, having the flu CONSTANTLY, with no end in sight, and then ask them if they would be able to live "normally"
That's a great way to think about it and it's exactly how I feel.
Some days I struggle to just do light housework and cook let alone go out shopping and socialising. I've become a recluse due to this ill health and it's made me very anxious.
Im hypothyroidic i was diagnosed november last year.
I felt so poorly and had beem for years...
It got so bad i was having unconscious episods, my mum demanded the test be done and sure enough it came back hypothyroidism.
Im on 100mu of levothyroxine.
Ive been feeling like poo these last few days, tired,but then cant sleep,sick,dizzy,down and i had 2 unconcious episodes.... thankfully mu fiance was there to get me out of it.
So yes i think its normal to feel like poo until they get the medication right and then maybe awhile after that.
Hi Julie, i read this, and its like I'm reading something I'd written myself! It is truly awful to feel this way, day in, day out, and living like this, is soul destroying, so i really do empathise. I have Hashis, and I'm not being treated for it, as my Endo says my TSH has got to go over 10 , with a low FT4 for the NHS to treat me, so, I'm just being left.
I want to ask you a question regarding the test results you posted, were these taken BEFORE you were on Thyroxine?
I ask, because (please someone correct me if I'm wrong, as my brain is pretty mush!) i notice your TSH rises, but so does your FT4, i thought as TSH rises, FT4 drops, and vice versa?
It's awful isn't it. My gp too said they do not treat until tsh hits 10 but as I'm severely symptomatic I'm being treated now. I think the fact tsh jumped from 7 to 9 in 2 months he realised it wasn't going to get better itself.
My gp told me my t4 is rising because as others have told me on here t4 can rise to keep up with the demands of tsh and eventually it will drop in my boots as it'll stop being able to keep up with the tsh demand for more t4. That's how I understand it. But I have been worried why my t4 keeps rising. My latest results did show ft4 had dropped from 15.8 to 15.7. Tiny drop.
All my results were without any treatment. I've only been medicated the last 11 days.
Ah, ok, I have never heard of that. Have you got Hashis? As the swings back and forth from hypo to hyper can make you go from severely slow, depressed, drugged up feeling, sleeping loads, to awful anxiety, trembling, etc. Does your face bloat as well? Mine does, on and off, depending on where I'm at (usually when I feel hypo) mines like it at the moment, I feel like cr*p!
My face is kind of podgy like of got jowels and I'm on my 36. I posted I think a week ago with a photo of my face. If you search my posts you'll see my ugly mug haha.
My hashis last 2 tests were fine. Well within normal range.
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A TSH of 10 or more would be at least twice the upper normal limit, so why do they wait for the TSH to rise to 10 before they start you on treatment...?! By then, you are most likely seriously hypothyroid...!
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Exactly it's outrageous!
Thank you for replying. I broke down crying reading your reply because it answered alot of unanswered questions.
I've been so poorly and fighting with my gp since last March. I started with fatigue and had to have rest days throughout the summer. I had to stop workouts too. My chikdren had to accept mum couldn't do days out in the summer and just a visit to the park was too much. I'd do it then be floored. I pushed myself all summer and by August I saw my gp. He said he thought I was hypothyroid as my mum has it. He ran tests. My tsh was 5.35. Ft4 11. B12 212. Ferritin 15 (it's been low over 10 years). He marked all as normal but prescribed iron. Bone profile fine so didn't test vitamin d he said. I rang him saying my tsh was almost over the range of 5.5 and he told me I was being a hypochondriac. I have had anxiety in the past triggered by trauma but I knew I was right and not a damn hypochondriac. So I continued to plod on feeling terrible. By November my son was severely crippled by panic attacks and told me he wanted to end his life. A huge shock. I new he was being bullied and I'd done my best to help but I had no idea he felt that way. We had a huge battle with camhs who refused to help him and us. My gp was outraged. I had to give him therapy myself as the children's mental health services said is best to help him as I knew more about anxiety than them (go figure?). I worked hard and saw him go through sheer he'll. It was the worst 3 months of my life and I swear I had a breakdown. I ended up bed ridden by December for a week with sheer exhaustion and stress. Thsts when my fatigue got worse as did the dizziness and feeling like i was on a boat. My gp kept a close eye on me and ran tests. Of course he did bloods in the afternoon so tsh was 3. He told me oh your tsh is now normal it's come down. By January I gave up on doctors. My son was back in full health and doing amazing. He thanked me for giving him his life back. I'm so proud of him. My health though deteriorated. My fatigue became chronic. I went private with blue horizon and that's when it showed the tsh was 6.54. Their range is 0.27-4.2 and my ft4 was 14.7 ish. Range 12-22. Again gp dismissed me and said antibodies are normal therefore you're not hypothyroid. You can't be hypothyroid with no antibodies. He dismissed my high tsh and said 'we don't know what to do with people like you with chronic fatigue and good blood results'. Basically putting me in the cfs box.
The nice gp came out to my hoise and disagreed with the head gp in the practice and diagnosed subclinical hypothyroidism. He agreed to accept my blue horizon results and to test every 6 weeks and once near 10 he would treat. I March it increased to 7.5 but t4 rose to 15.8 and ft3 was 5.6. It puzzled him as my t4 was rising but he did say this can happen as it'd trying to keep up with the demand from the tsh for more thyroxine. Then my latest results he agreed I needed treatment as he said 9.28 was high and I had 3 consecutive tests showing increases.
My latest b12 in March was 477. Ferritin 34. Hb was good at 15.8. Vitamin d I've not had tested. Like I said antibodies all normal.
Thank you for your reassuring reply to me. I have no support other than my husband, I have no family other than him and my children. Well I have my dad and gran but I've no mother in my life or sisters. We are only civil now. They cut me out 4 years ago. My brother attacked me (he has a serious mental health lroblem) I cut him out as police advised and my mum and sisters resented me for doing so. Hence I have no family support. I'm ok and my anxiety improved once away from the family that hurt me but my ill health has triggered my anxiety again. I only have to tolerate my family on birthdays but even that makes me highly anxious so I'm not looking forward to tomorrow lol. I have wonderful support in my husband and frinds though. A few have took my ill health as a snub. My auntie has stopped speaking to me since I've been too ill to attend family events and dental appointments (she works at my dentist). You certainly find out who really cares when you get chronically ill lol! My family are bizarre for sure 😄
Don't let your unsympathetic family get you down or dictate how you should spend your sons birthday! Put yourself, your son and your husband first..stuff the rest of them . With Hypothyroidism you have to give yourself a break and accept that for a while you are going to have take things easy (difficult I know but very important). Ask your son what he wants to do and if he isn't bothered about seeing the extended family then explain to them that you are doing it differently this year. Why not go for a meal somewhere of your sons choice so you don't have to cook, or go to the cinema? Anything that involves minimal input from you but that you can all enjoy. You can always promise him a belated day out somewhere more exciting in the summer when you are feeling better x
That's it. I'm so drained I can't do meals out or trips to the cinema. I feel like a terrible mother. All this has caused me to be quite agoraphobic but it's mostly due to how ill I am. I was doing days out often until last month as they have become way too much. Xx
Well then order a take away, send hubby out for popcorn and have a family night in with a movie..you're not a terrible Mother. Your son will understand and like I said, promise a belated Birthday treat later in the year x
Thank you. You've made me feel much better about myself. Thank you I appreciate your kind words. I have been so upset I'm letting my family down being ill. I've even tried pushing myself to try and believe it's all in my head but I feel dreadful.
Just remember this is a temporary situation..you'll get better, especially with the help of people on here. And kids remember time spent with parents more than days out, there are lots of ways to show your son you love and care. Have a lovely, realxing day with hime tomorrow and stop being so hard on yourself xx
Unfortunately I can totally identify with all your symptoms . It totally wiped me out so much that I couldn't work for 6 months until I did my own research and went privately to an endo who agreed I needed 50 mg thyroxine initially due to my symptoms , family history and my goitre ! I still have muscle weakness and diagnosed vestibular dysfunction ... you feel drunk and unstable ....again I had to have tests privately before a consultant put me on his NHS list and I've had good support from The Royal free and University College hosp , London ever since ....not in my local hosp area . I have found a Gp in my surgery who listens and supports .....2 others I wouldn't go to at all . Ask for a print out of blood test results every time and keep a file of medical letters etc . As for blood testing , your Gp will put it on the system so I now go early to the local hosp on my way to work instead of the surgery doing it . Take care .
I wouldn't say you have Addison's disease because it's not only a very rare disease but you'd have other symptoms such as weight loss, craving salty foods, hyperpigmentation, low sodium levels and low blood pressure etc. It sounds like your problem is more hypothyroid related because the symptoms match low thyroid rather than addison's. Many people with hypo can feel really poorly and swing between between temperature and have good and bad days. I'm a fellow hypo patient too and I've been having episodes of heat intolerance as well as cold intolerance. You'll be amazed how many things in the body the thyroid controls, it's crazy.
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