I decided to write after reading some of the threads and seeing how informative the community here is and how everyone supports each other. I think that's what I need, some support. And also guidance, because despite being hypothroid for two years now, I'm not up to scratch with managing my own health at all.
At this point I have to say I've never felt so unwell. I was on 50 mcg daily, which I was taking every day but when I was upped to 100 mcg, I didn't take to it well. Rather than go back and speak to my doctor which would have been the responsible thing to do, I just seemed to have stopped taking meds properly for about 3 months now. I have been taking 50 mcg erratically. However, the last 4 days I have taken it every day.
My symptoms are as follows: my eyebrows have fallen out significantly, my hair is brittle and falling out, my skin feels awful, I am freezing cold at all times with no respite from this, my brain feels like it's in a fog, my memory power seems to have shutdown and weight gain that seems to show up overnight. I guess I've become proactive in last week because two scary things are happening - my boyfriend is reporting that I'm shaking uncontrollably in the night? I don't know what this is but I've seen some other members report that here too. Also, I'm now sleeping about 12 hours a day (minimum) which cares me because I simply do not wake up. I am also extremely tearful (emotionality?).
I feel like a completely different person to who I am. I am postgraduate student working 3 voluntary jobs and trying for a distinction. I have exams in one month which will dictate whether I am accepted onto a doctoral training program. Now is the worst time for me to be feeling so ill and unproductive. I can't even study if I try. I think this is what's forcing me to deal with my health. I feel disapointed in myself that I haven't had the foresight to realise the severity of hypothyroidism and look after myself better.
I am going to see my GP today. I will tell her all of the above. I am going to ask if I should go straight back up to 100mcg Thyroxine. I am also going to ask for a T3 supplement as an adjunct since I've heard some people experience rapid recovery with this.
The complications are as follows - my ferritin level came back at 19 ug. I believe the ref range in the uk is somewhere between 12-300 ug. So to me, mine seems like it might be borderline low. I have read several journal articles which stress that ferritin level should be >50 ug for proper T4-T3 conversion. Should I mention this to my doctor?
Also, I am being treated for a gastric ulcer. It is very painful and I'm on PPI's - which reduce acid formation in stomach. Whilst I do try to leave time between Thyroxine and PPI's, I'm not sure how well the Thyroxine will be generally absorbed as PPI's are known to cause decreases in general GI absorption. Therefore, I wondered if a thyroxine syrup would be faster absorbed? Has anyone in the UK tried this?
I feel pretty emotional about all this and desperate to do anything to get better. I had no idea it could be this bad. Feels quite foolish - given that you get free presriptions to take Thyroxine for life, I am not sure how I managed to convince myself it was not a big deal.
Any support, advice, guidance, general hope would be much appreciated. Thank you.
Good for you for getting back on a program after being hit and miss for a few months. Taking medication erratically will manifest with multiple symptoms that you've been having. Hopefully you'll have some new labs to see where your levels are currently and then get an appropriate dose and go from there. If this were me, I would pass on to my doc if doubling my dose from 50-100 was bothersome and think you might consider doing that. Perhaps smaller titration would be better for you. Are you on an antibiotic for your ulcer or just acid reducer? Maybe you need a course of antibiotics. Also, one can take acid reducers while taking thyroid medicine. Once your ulcer clears, perhaps you'll be able to d/c that med. Be encouraged that you're doing the right thing being more proactive and compliant with your health. Good luck at your doctor appointment, would love to hear how that goes for you.
Well, you already know it wasn't a good idea to stop your med, or to be erratic about taking it, so we won't go there.
When you made the increase from 50 mcg to 100 mcg, I'd say you jumped too much too fast, doubling your dosage. It's always best to increase/decrease in the smallest increments possible, in order to let the body get used to it. You probably should have gone from 50 mcg to 75 mcg, then 88 mcg, then 100, if you even needed to go that high. Chances are that either 75 mcg or 88 mcg would have been adequate for a while before going up higher.
That said, it would be most helpful if you can post current thyroid blood tests. You should be getting TSH, Free T3 and Free T4; however, I notice you are in UK and we often find members have a hard time getting adequate testing there. Be sure to include reference ranges with any lab results as ranges vary lab to lab and have to come from your own report.
Do you know if you have Hashimoto's Thyroiditis? Hashimoto's is an autoimmune disease in which the body sees the thyroid as foreign and produces antibodies to destroy it. You should get antibody testing, if you haven't already had them. The tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab).
Your symptoms are typical for hypothyroidism, which would be expected from not taking your medication properly.
You might want to discuss with your doctor, starting back at the 50 mcg dose, take it daily for 4-6 weeks, retest, then increase only to 75 mcg or even 66 mcg (alternate 50 mcg with 75 mcg). Increasing slowly will better insure that your body gets used to each increase. It takes 4-6 weeks for each dosage change to take full effect.
You must take your thyroid medication daily. Gastric "upset" is a common symptom of hypothyroidism, so once you get your levels back in line, you might not have to much trouble. If you take your thyroxine a couple hours before the PPI, you should do okay, but if your levels don't come up adequately, you might have increase your thyroxine dose to account for lack of absorption. Treating hypothyroidism takes a lot of patience --- go slowly.
You'll be much better able to make a distinction in life, by taking proper care of yourself, so you feel energetic and well.
Helicobacter pylori bacteria causes 8 out of 10 cases of gastric ulcers. Anti-inflammatory drugs (NSAIDs) eg: aspirin, ibuprofen causes around 2 in 10 cases. There are some other rare causes but H pylori and NSAIDS are the top two causes. Hopefully you were not given the "stress caused you ulcer" diagnosis.
Dear Courtney - thank you for your response, much appreciated. I agree, rather than having thrown the regime out the window when doubling did not work I should have titrated smaller. The Dr' apointment is this evening, so I will see what she says. I am not on an antibiotic because I do not have Helicobacter Pylori, regular testing confirms this - I have chronic gastric ulceritis which means every now and then I will develop an ulcer and need treatment. I seem to be much better at treating this than my Hypothyroidism, perhaps because Hypo always feels fine fine fine, then a bit worse, bit worse then BAM. Like death.
Red Star - thank you for the info re: H Pylori, much appreciated, as above my ulcers are not infection mediated.
Barb - "Well, you already know it wasn't a good idea to stop your med, or to be erratic about taking it, so we won't go there." That's exactly what my mother aka BFF said (albeit with a bit more of a scolding) but you made me smile. I will post my blood results and ref ranges as soon as I get them, thanks. Hopefully I will be able to get my free levels tested. Hashimotos has not been mentioned to me - I will check. I am going to try to start on 75 mcg and see how that goes, with doctor's support.
The idea of feeling like this for 6 weeks makes me feel disheartened.
How do you guys cope when it gets very bad? And does anyone have any experience of iron-levels requiring increasing or T3 therapy alongside T4?
Like you, my hypo doesn't make me feel bad (the GI issues do, but under control). My hypo was detected through routine annual bloodwork. For me, the medicine hasn't altered how I feel except to get my gut moving more predictably. I have taken calcium and a multi vitamin for sometime so adding thyroid med was easy for me. Hopefully you will get into a routine you can do in your sleep. Something you might ask your doctor about is the timing of the PPI. My internist and pharmacist both say I can take Zantac any time, that I don't have to have time buffer between it and levothyroxine because Zantac is 24 hour acid reducer and doesn't contain calcium. Does that make sense? If the acid is reduced round the clock, there is no window in which to take the levo. That said, I don't take Zantac, but had considered it for possible GERD. I'm waiting to talk to my GI about this in a few weeks. Sorry I got off track of your questions. My iron levels are ok, so no experience with that. Same for T3, I just take levothyroxine. Hope others share more about that. Finally, hopefully it won't take a full six weeks to feel better. It does take awhile to get full benefits, but you might get at least some subtle benefit sooner.
My mother had bile gastritis for over 25 years and she was in pain on and off for 20 years and in severe pain for the last 5 years. Today she is pain free due to digestive enzymes supplements containing proteases (enzymes that digest protein).
An excellent article i found on the subject - "Digestive Disorders and Enzymes" by EnzymeStuff...here is a small excerpt...
"However, there are lots of clinical studies which clearly show that taking proteases significantly speeds up healing of ulcers, gastritis, and wounded tissue. Which looks like you would specifically want proteases with gastritis. So what do you do?
Here is what is going on in the gut:
Proteases help reduce inflammation, clean out debris and infection, and stimulate healing. The can result in clean, yet exposed tissue that is very sensitive."
Courtney may be right about taking the PPI with your thyroid med; talk to your doctor or pharmacist to be sure. Otherwise, you could take the PPI at night and your thyroid med in the morning; that's what I did when I was on a PPI.
I, too, take digestive enzymes; the one I take contains, protease, lipase, amylase, bromelain, papain, betaine hydrochloride, and pepsin, so it aids in digestion of all types of foods. You should talk to your doctor about any supplements. I had GERD really bad, but did not have ulcers and I know ulcers can much different and more difficult to treat.
I have had low iron levels and I do supplement, since iron is necessary for proper conversion of thyroid hormone. As with all supplements, I separate it by at least 4 hours from my thyroid med.
I do, also, take a T3 med, along with my T4. T3 is usually only added if one doesn't convert the T4 properly, which some of us don't. If one is on a T3 med, Free T3 testing must be included every time blood work is done. It's my understanding from other members we've had from UK that T3 med is quite hard to get there, as is Free T3 testing, due to NHS guidelines. Many of our members have had to go private in order to get adequate testing and medication.
While it takes 4-6 weeks for the med to reach full potential in your blood, there's a possibility that you will notice subtle changes for the better, sooner than that.
We all have bad days, but the idea is that we take the med every day and hope that, soon, we will have more good days than bad. For most of us, that turns out to be the case, some of us have to try something else. Treating hypothyroidism can take a lot of patience, because nothing happens overnight.
Yes, do talk to your doctor about starting back at a lower dose. Even 50 mcg for a week or so, just to get your body used to it, then bump up to 62.5 mcg or 75 mcg.
You'll find that taking the pills consistently, will put things in a whole different perspective. If you establish a routine that works for you, and follow it every day, it will become automatic. I followed the same routine for so many years when I was working, it's just "part of me" and though I've been retired for nearly 2 years, I still follow it pretty closely.
At any rate, you've taken the first step to get back on med and that's what's important.
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