Can anyone help?

Since my GP reduced my dose of thyroxine, only a tiny bit, I have developed a host of new weird symptoms. I'm getting skin rashes, mostly under armpits and breasts. I also swell up by four of five pounds of added weight, I'm guessing water weight, within an hour or two of getting up. I have taken measurements and thighs, breasts, waist, hips all about two to three inches bigger. I have no love handles when I get up but I do after about two hours. I can't tolerate lots of foods like onions, wheat, milk, caffeine. GP is sending me for an abdominal ultrasound. My rings fall off my fingers then they can't be removed cos have swollen up. I am constipated and have a lot of gas. Sorry! GP has insisted I wait six weeks before another blood test. I have 10 more days to go. Have made up my mind to insist on a specialist referral to someone on a list provided by Thyroid Uk, but just want your thoughts please. My last test was TSH 0.44, range 0.55 to 4.78, and T4 was 22.2. I am on 125 mcg of levo for six days and 100mcg for one day. Have also been prescribed buscopan for suspected Irritable Bowel Syndrome, but find I usually don't need to take it if I avoid my trigger foods. Which are growing in number. I have Hashi's but GP doesn't test my antibodies anymore! They were 1000.

Sorry, last thing, honestly, I can hear a crunching sound in my neck on one side. Your thoughts please. Thank you

26 Replies

  • What was the dose reduction, Korky?

  • All it was was a reduction from 125mcg every day to 125mcg for six days and 100 on the seventh. I have been on that for 10 days shy of six weeks.

  • That's such a tiny reduction I find it hard to believe it could cause such havoc. How long after the reduction did the symptoms start, and how long after you started Buscopen?

  • Hi Clutter. Yes I agree. Can't be the dose methinks. I was already having gut issues before the reduction but they flared up really badly about two weeks ago, which is when I got prescribed the. Buscopan, and was referred for the abdominal ultrasound. The horrible water weight bloating probably started around the same time. It happened to me once before, and that was when, to my GP's dismay, I had swung to Hypo again. So wondering if that's what's happening again? Only took the. Buscopan when I had the flare up. Now just don't eat lots of things and that works. The rash has just started in last few days. Also, keep popping blood vessels in my eye?! Oh, and one more thing, don't know if related, but I was getting a lot of pain in top of my right foot. Was seriously hobbling some days. Anyway, now have a small lump there. My sister, who is a Physio, said it's bone growth, and that it's weird as it's normally associated with trauma/injury which I haven't had. Thank you for your thoughts.

  • If your water retention was connected to the dose reduction it wouldn't fluctuate the way it has. Yours appears after you've been up and about which suggests something wrong with your circulation to me. I think you need to see your GP to rule out heart/kidney problems.

  • Thanks Clutter. I looked at the link. I will raise it with him. Talk about living at the Doctor's! It's my second home these days.

  • Swelling was one main symptom of untreated hypo before the blood tests came in. As you say yours comes and goes so I am not saying you have this but for your information some links:-

    I wonder if you have a sensitivity to levo. You also have clinical symptoms of hypo such as constipation etc.

  • Hi Shaws. Thanks for this. Very interesting reading. And before my tiny dose reduction I was NOT swelling up. Previously, before they got me up to 125, I WAS swelling.

  • If you can't get an emergency appt. why not go back to 125mcg x 7 and see if it stops the swelling?

  • Hi Clutter. The only reason I haven't done that is because I fear that when my GP does the next blood test, he might then push to reduce me further. He was not happy with my TSH being 'suppressed'. This is despite me telling him that I felt fine/so much better. Then again, maybe I should cos, I'm asking for a referral anyway as I don't think they can manage me.

  • Perhaps your GP needs reminding it's your symptoms that need treating not your TSH being forced into a general population range which is not individual to you.

  • I've had a tiny reduction of 25 mcg a week and I've felt the difference but nowhere near the havoc you have at the moment. Could you have developed an allergy to the Buscupen? Added to what Clutter has suggested I think your antibodies should be tested. Such a lot is happening and you need to eliminate what you can quickly. Hope it gets sorted soon.

  • Can retesting antibodies be of any use unless its to be used as a marker for dietary or medication changes?

  • I don't have any antibodies but realise they can go up and down so I was thinking from a medication point of view

  • Thank you silverfox. Think I will try and get emergency GP appointment.

  • Hi. I've just gone back through my diary and noted that the swelling started approx two weeks after my tiny dose reduction and has continued to get worse since then. I think I will put my dose back up and see if that has any effect.

  • not sue if this will help but re the IBS part, look at "FODMAP" foods. i found that i've had fructose malabsorbtion for 10 years which was not picked up by various scans and specialist appointments, 2 weeks following FODMAP elimination and the swelling is gone. also the water retention would likly be a food reaction, your body is an a very delicate balance, a sensitivity might have been triggered by the dose change. personally i swell just like you if i eat wheat (plus i cry a lot) very common to have wheat and dairy allergies, especially with such high antibodies for hashimotos. good luck, hope this helps!

  • My weight is like a bouncing ball! I'm assuming by that and looking at me that its fluid. Earlier in the week I took up an offer for cheaper mineral and vitamins testing and food intolerance. There was a long list of things to be tested and on discussion I didn't disclose the issues I already know I have-they found them and many more! I was told finding 10 issues wasn't unusual and they had an anorexic sufferer with 20 so I was rather shocked to find I had 42! Yesterday for various reasons I only ate oats and nuts in my cereal, scrambled eggs (4) and a banana which the test says to avoid but I thought to finish the bunch. Today lost over a pound and feel a lot better. Of on holiday tomorrow and will try to be thoughtful on what I eat and then with seriously look into changing my diet to the good as then slowly introducing other things to find a safe level. All my vits were low despite supplementing as well. Only D2 was rested-low but don't know how that correlates with D3 which I do take and get good readings. Never realised the body was so sensitive! I shall now respect it more.

  • You could be producing more reverse T3 and less T3 after having been on the Levo for awhile. Some people do good for years and then, for some reason, the body doesn't use it as well as before. You should probably try to have your T3 checked to see if you are still converting. You may need to add a little T3 to a lowered dose of T4. Have you considered also going 100% gluten free? I know it seems like such a tiny decrease in T4 but our bodies are extremely sensitive to thyroid hormone and just lowering even a little can make a difference. But if it did, I'd be willing to bet you weren't converting real well on the 125 mcg 7 days a week and maybe would have benefitted from addition of a little T3 all along. I hope you can get to a doctor who understands TSH can be suppressed in people who are optimally treated with thyroid hormone.

  • Thanks Linzi & Dellie. Yes been doing the FODMAP diet. That's how I worked out what I was having problems with, and yes, am now 100% gluten free, and on lacto free milk Only dairy I have is from cheese as recommended by FODMAP. No pains now, but boy it was not good on wheat and terrible with onions and fresh coffee! Eating out has proved to be a bit tricky, but at home I'm fine cos can manage what I eat. The green tops of spring onions are a good alternative to onions.

    I am ringing for an appointment in 15 minutes time. Wish me luck. Am going armed with the information on Myxedema and the details of the specialist I wish to be referred to.

  • yep can relate - I was on 100 then she put me down to 75 (just in case I got bone troubles) seemingly women are more prone to bone troubles if on too much levo - I am a different size when I wake up every morning than I am when I go to bed - I find it quite depressing - Ive had to put up with this for 1-2 years

  • Hi Susan. Sorry, to hear that. It's horrible isn't it? Just got back from my appointment - got last slot! GP was very dismissive of my symptoms. Also said my TSH of 0.44 was too low and I could get osteoporosis! I said how come I felt fine then when I was on 125mcg and all the swelling stopped? Anyway, last blood test on 8 May was TSH 0.8 (range 0.55 to 4.78). Bet it's even higher than that now! I said to him that it was seriously affecting my quality of life. And I had had enough. He said it's easy to treat. I said if that was the case why was I still having blood tests every six weeks or so because my levels keep changing? No answer given.

    Asked to be referred to the consultant of my choice at a hospital in London. He asked why I couldn't see someone locally (King's Lynn). I said I believed it was my right to choose. He said I will request but you might not get it as out of area. The website of my chosen hospital says, and I quote, "you can choose to be seen at any hospital in the country. This means that regardless of where you live you have the right to see one of ...experts". So if they say no. Complaint straight in to practice manager.

  • Rash could be Dermatitis Herpetiformis which is a manifestation of Coeliac Disease, and with the gastric symptoms you describe that's the first thing I'd want tested. You say you can't eat wheat but are you still eating other gluten containing foods?

  • korky, it could be a coincidence with the reduction and your new symptom. I was looking at your FT4 at 22 and wonder if it is converting to FT3, which of course you do not have the number for.

    If your FT4 at the very top of range and your FT3 is very low, it would explain some things. Someone else mentioned that you may not be converting and just piling up reverse T3 (inactive). I think you would have hypo symptoms in that case. Low conversion can be due to high cortisol or low iron.

  • "Sorry, last thing, honestly, I can hear a crunching sound in my neck on one side." Also the foot pain might be an indication...

    I know this might sound weird, but have you ever seen a chiropractor? When I am out of alignment, it causes nerve interference and I get these exact same symptoms. When you are out of alignment the spine can compress on nerves and blood vessels when sitting or standing that wouldn't happen when you are lying down. This creates havoc with the entire system including pain in the hips, knees, feet, etc. I would drop 5lbs in swelling once I was adjusted. This might be something to check into. It made a huge difference for me. By the way I see a NUCCA Chiropractor who specializes in the neck.

  • Do yourself a big favor, get to a reputable naturopathic doctor. At the onset of menopause ( 8 yrs. ago ), my first symptom was anxiety and panic attacks , followed by many other symptoms ( inner 24/7 jittery-nervous feeling, weight loss, blotting, hives, dizziness, vision issues, dry/itchy skin, interrupted sleeping patterns, to name a few and my latest symptom to date, heat intolerance ) . You didn't mention your age, it could be do to perimenopause/menopause. I had seen two medical doctors, one said I needed to go on thyroid med's, then I wanted another opinion, the next said my thyroid numbers were fine, no need for med's. I had many tests done over a three yr. period. I did start going to a very good acupuncture/Chinese med. doctor , he really helped with my anxiety. If you never had acupuncture, it does not hurt , I look forward to going ! Finally I found an excellent naturopathic doctor who me do in home blood spot tests as well as saliva tests about every three months for the thyroid as well as hormones and adrenals ( which medical doctors don't do ). This showed how imbalanced my hormones were; this can cause the thyroid to be out of balance. Instead of the traditional thyroid med's , she has me on different natural supplements. If your problems are all hormonal related to menopause, then it is a natural progression and the body can get through this change ( over time ) . It is not fun, I know ! Trust me , eliminate gluten, dairy and sugars from your diet, it will help greatly in healing your body ( no smoking , alcohol , soda, diet soda, junk foods ). As for IBS, they almost all say you have this , just change the diet ( drink lots of quality water ) and see a change in your blotting . The other lie , is that you are depressed and need drugs for that.....complete rubbish ! Start to educate yourself, trust your body and seek out a more natural approach first. God bless !

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