At some time on Friday 26th Jan, I decided to quit all my meds. I had been on antidepressants for just over 9 yrs, and diagnosed with hypothyroid in Nov 2013. I was only on 75mg levothyroxine. (will post more details of meds at end).
By day 6, I started to think that being in a fog, aches pains, swelling, and constant flu and tiredness feeling was better than the weird sicky, dizzy-ish feeling and extremely persistent headache. I called and hoped to speak to to any doctor (but mine!), but ended up with a call back the next morning. Told to take levo and anti depressants, and slowly reduce doses. Like an idiot, I thought my quack knew best!
Within 6 hours all the hypo symptoms came back. It has taken another 3 days to get back to where I was last week.
My head has cleared, (giving the other half a tongue lashing when he starts, instead of the usual 'whateva', crying at sad movies, the last air bender!?!. and actually having conversations - miracles. Have been a bit snappy, and patience is an issue, but I am alive - forgotten what that was like. What I wondered was how long it would last, just hoping I can sort out a new doc who won't say its all in my mind.
Levo made me feel worse as well. I would probably opt not to take it either (ever again) if that were my only choice in thyroid hormone replacement medicine. Ill let other more knowledgeable people (hopefully) explain about poor conversion issues and all the rest.
There's no need to wean off Levothyroxine but it can be dangerous to stop antidepressants cold turkey and you were taking hefty doses of ADS. I believe Omeprazole is supposed to be weaned off very gradually.
TSH 0.94 was low normal and FT4 13.5 is low in range. If you were still taking Levothyroxine and symptomatic a dose increase may have been a good idea.
Quite a lot of people feel better when they first stop Levothyroxine. I did too. The feel good factor rarely lasts beyond two weeks when thyroid levels drop and hypothyroid symptoms come back. It then takes weeks to absorb and metabolise Levothyroxine when you resume taking it and some months for symptoms to resolve.
Don't throw out your Levothyroxine and the other meds you've stopped as you may want to resume taking them soon.
not a hope! When I was able to get about again, I took all but the omeprazole back to boots. I have been thinking about T3, If I leave it to the end of the month, I'm due a blood test, and can take it from there. But there ain't no way I want to take either the anti-dep or levo again. Its only now that I realise how zombiefied I was.
I am expecting the drop, but its nice to feel 20 yrs younger,
If your FT3 is low adding some T3 to Levothyroxine can be beneficial. I was very ill when I was switched to Levothyroxine but adding T3 meant it calmed the adverse effects Levothyroxine caused and raised my FT3 which was below range. I find T4+T3 combination is a smoother ride than T3 only.
Unfortunately my doc is not very helpful. as long as results are in the normal range, he ain't fussed and everything else is mental. And if I can get to the end of the month, I might regain control of the tongue, it seems to want to catch up with a lot of talking! Be it humour or stating how I really feel, oops
Have you ever managed to get your hands on T3 tablets? Like The_will_of_Jill I always felt far worse on Levo. Not that I've got it correct yet on only T3
If you want sources for T3 without prescription write a new post and ask members to send you a private message with sources. It can take a couple of weeks after delivery for orders to arrive from Europe.
I was looking at Natural Sources Raw Thyroid, which is available through ebay or amazon uk, cannot at the moment remember which. Couldn't spare it this month as son of to Norway, so all spare cash getting changed up for him.
Potency: Each capsule contains 50mg of raw thyroid tissue. According to my calculations, this means that each capsule contains about 7.5 mcg of T3 and 32 mcg of T4.
Thank you, I only see the comparison to levo,and the rating it was given, had not got to the other bits, It also had armor ( is that right,) and a couple of others.
Haven't got to the comparison stage yet, just what it actually was.
On that subject, is any of them available in Norway?
I was looking at the content of Raw Thyroid. Unfortunately the rating is unlikely to be made up of people switching from Levothyroxine to RT. I don't think Paul Jones' method of extrapolating the T4 and T3 content of prescription strength NDT to estimate the T4 and T3 in Raw Thyroid is a valid.
NDT isn't available in Norway. I've no idea whether or not Raw Thyroid is.
Why don't you try Thyroid-S or Thiroyd instead of Raw Thyroid? 1 grain (60mg) Thai NDT is equivalent to 65mcg Levothyroxine. It's no longer available on eBay and Amazon but If you want sources write a post asking members to send you supplier names via private messages.
Personally, I think you are "coasting a wave" of just about adequate thyroid function. It may well be OK, but I wouldn't wash my hands of possible trouble in the future. Keep regular thyroid tests to monitor developments, and if you feel ill, don't hesitate to say so.
I actually agree with you, but it's nice to feel alive, to actually enjoy being alive and take pleasure in things again. I am due blood tests near the end of the month, so will pursue options then.
Oh wow silverfox. That’s exavtly how I felt last summer after a failed ivf I came off the levothyroxine too.
I felt masses better but thought it was the after effects of the ivf drugs as I noticed a massive hormonal change but now I’m wondering if it’s the Levo...
I have come off it in past and felt ok too (but oddly enough I don’t feel good if I’m undermedicated whilst on it?)
For ivf they want TSH below 2.5 and I can’t see me achieving that without Levo so I might have to wait a little longer ... 😞
No, my quack says its all in my mind, I must have a great imagination, to think that something so small can cause so much pain.
I am hoping he will check everything, but I won't hold my breath. I should have enough saved by then to get a full bloods done privately, which should give me a clear reading of how I really stand.
And to be totally honest, with out all the other crap in my system, should be more accurate than when first diagnosed.
Hi Silverfox13, I would never recommend to Anyone that they suddenly stop antidepressants or the PPI ozmeroprole (sp?). That said, my Endo fully supported my decision to taper off my ADS as he said they do change how your brain works and that can make it hard to understand how well the thyroid meds are working, or not. I also tapered off the PPI as I’d read enough about it interfering with cellular uptake of T3, and some reports of increased Alzheimer’s risk with long-term PPI use. I’m hopeful that without the ADS and PPI my body can make better use of my thyroid meds. So if you’re feeling okay, or more than okay in those areas then maybe you’ve had a lucky strike, and I’m very happy for you.
I totally get your bliss at feeling alive — how liberating to know that you actually Can feel so good. That gives a big dollop of hope! What a lazy “diagnosis” to say it’s all in your head. That is just wrong!
That said... if you have Hashimoto’s/Hypothyroidism you need some form (whatever is right for you) of thyroid medication. Why not use some of that energy to find a better GP and /or Endo? Don’t risk a great big dive like Clutter says, it can take so long to come out of a thyroid slump. I’m still recovering from a horrible dive I had last April due to being prescribed the wrong meds for me (almost as good as having No meds).
Finally, I read this today on Thyroid Phoenix and maybe it’ll be useful for you.. or not... but hopefully
Thank you Blue_Bee, that is the clearest way I have read , that explains how I felt, - the stages. I think mine got mixed with grief when I lost my parents, truth be told, still adjusting. Throw in a little crazy episode where I felt driven out of my home, left everything behind, 18 months living in a trailer tent, diagnosed with CKD stage 3, topped off with a nasty bout of gallstones, a 10 stone weight increase, chronic constipation and near starvation, so that I could keep my son and fur babies healthy, and losing my knashers, (I really miss salted peanuts, peanut butter some how isn't the same, lol). To be told I would be on tabs for life meant nothing.
As I have slowly dealt with everything else, gall bladder removed, teeth out , occasional glimpses of toes, making a new home for us, slowly emerging from a cocoon of numbness, to become one with the rhythms of my body again and what it is telling me. To accept things that I did to hold family together. The last barrier being the anti d's.
I know I am heading for a crash, and as long as that is the only one this time round, then I can deal with it, face it with a clear mind, maybe smiling, maybe grimacing. But I have started climbing that ladder, back to the sunlight, back to a feeling person, and ain't nothing gonna take that spark away again.
I would not advise my route to anybody, I see the error in the way I am doing it, but that's my bodies way to regain some normality for me.
Sorry for rabbiting on, I checked all the side affects of what I was doing, admittedly 3 days afterwards, but nothing was to risky, to not carry on, taking all things, I have about 4 - 5 wks before I need to panic, but by then I should have a plan in place to help with that nose dive that's coming. Plus I also have all you lovely people, with a kind word and helpful advise. And for that I am eternally grateful. X
It’s good not to be alone, good to have support here. I need to gently ask dear Silverfox... Why is a crash inevitable?
Why should it not be possible — now that you’re feeling better without the ADS — that you try for a different GP, in parallel with getting all the support you need here to self-medicate if needs be?
You never know — there may be a good GP there for you, and that can be an enormous support, in addition to all the support here. Why shouldn’t you have Both kinds of support AND the right thyroid meds for you.
I’m just going to say it — you need thyroid meds and you don’t need to crash first... that’s an unnecessary, painful complication.
Hi, I have had first hand experience with a few of your medications: Omeprazole raised my AST & ALT (liver) levels. I underwent a Esophageal Motility Study that documented I did not need a PPI. I was tapered off it very carefully by a Gastroenterologist (Luckly my AST & ALT labs returned to normal limits).
I've also taken Sertraline. It dehydrated me. I was on 25 mg & was told by more than one doctor at a teaching hospital I should have tapered off even this dose. Sertraline can reduce the effectiveness of thyroid medications so your body's residue thyroid medication might be working better now.
It is always recommended in the states at any rate to get a second opinion out of your area, when you disagree with your doctor's treatment plan.
My son is also on sertraline 100 mg, but for anxiety and anger issues, explains why he drinks rather a lot.
Mine was extremely dry mouth, even opal fruits didn't make the mouth water, lol. It's the silly little things like mouth watering, and regular bowels, that when you get them back for a while it's bliss.
Any way, I started taking the omep again, coz the heart burn got bad, my own fault, just had to cook something different, (chicken and tomato madras, well worth it, even though heartburn lasted all night.
Not sure what ast levels are, my alt level was 68 u/l (0 - 33).
You have been through the mill mega. I want to hug you. You don't mention the type of food you are eating. I keep watching thyroid videos & it keeps coming up that we need cholesterol for many body functions including brain function. I was eating a lot of dairy for cholesterol but have stopped cow dairy due to a possible food sensitivity. So have added lots of Omega 3 supplements. The brain is 80% fat & we should eat it. I was on 50mg sertraline, have cut it down to 25mg & would like to come off. I've learnt from your post that sertraline interferes with thyroid med.
Hi Marigold, sorry for delay. My diet has been the same since I was a kid, meat, 2 veg and spuds, and some fruit during the day, or banana sarnie in the evening. Don't have the second helpings or leftovers anymore. I have 1/2 - 3/4 pint of semi skimmed milk a day, about a litre of plain water, and 2-3 pints of other liquids. I no longer touch alcohol, but hadn't been a great drinker since teens. I used to be a big tea drinker, but cannot tolerate it anymore. The looks I get when I ask for a milky tea without the teabag. I can't seem to drink more that 3 cups/glasses of the same drink in a day, and coffee has to have powder creamer not milk. My average body temp has dropped to 35.8 C, and since the weather has got cold, I want to eat spicy food that has warmth in. I have a chamomile tea at bed time, and a green tea in the morning. I do love my cheese on toast, but limit it to once or twice a week.
I'm eating a lot less now than ever, yet weight is still increasing - my spare tyre is turning into a lorry wheel!
A book I have says "Alanine aminotransferase (ALT) & aspartame aminotransferase (AST) are two enzymes involved in the synthesis of glucose from amino acid molecules." It goes on to say they are most useful for detecting liver cell damage. If you have elevated readings that is all the more reason to get a second opinion if you are not receiving a satisfactory explanation for it (in my humble opinion).
If I remember correctly one thing you can get if you discontinue PPIs abruptly is "rebound" acid effects. My younger sister has read watermelon is a good food to eat with acid problems.🍉
I really hope that you can get off of the PPI for good. I went low on magnesium and potassium taking those devil pills, and I have now read that PPIs can cause CKD. All you need to do is google PPI and CKD. They are horrible pills, and I hope one day they are taken off the market. I don't believe that I retain magnesium now, as I have felt bad very quickly when I stop taking it, so that's another thing for life now. Past PPI use can stop the kidney's natural ability to retain magnesium in the body.
Although I've mentioned going off a PPI I sought a third medical opinion at another teaching hospital afterward. They gave me a different diagnosis than what I had been told prior.
Silverfox13, poor you. What a lot of nasty meds you were on
I agree with others that a bit of a high when you stop Levothyroxine is quite common. When I was on it I loved the days I had a blood test in the morning so would go out without my tablets. But of course it's a doubke edged sword, because in a couple of weeks it will all have washed out of your system and you'll be hypo again.
I really hope you're successful in coming off all those nasties. If I were you I'd try to get a supply of T3 or NDT to start on once the hypo becomes too much.
Please get a good set of private blood tests done first Blue Horizon 12 is a good start and then post all on here including the ranges.
Second don't bother about what your doctor says they sound useless especially when it comes to thyroid trouble.
I am now sorted out after a TT two years ago I took advice from this site and acted upon it and now feel well again.
I have now dumped the Doctor and Endo and self medicate it's cheap and easy.
I wasn't on medication before my TT in Oct 2015. I had never had any medication given to me before it was removed it was only 2.25 TSH before the operation. It was a shock to the system on Levo and it made me very ill. I have never had any hair loss or gut problems and no Hashi or weight either so lucky in that respect.
I was on Venlafaxine (Effexor) for about a year, and a lower dose. it didn’t help my depression but I had 3 months of withdrawal symptoms even with tapering off. I’ve also tried other antidepressants that were hell. My psych doc said it would only take a week, so untrue! Unfortunately I will need to find an antidepressant that does work as I’ve had every imaginable thyroid, vitamin etc. testing done. I am seeing another endocrinologist next week for a second opinion. The only thing I do now is self injections of B12 every 6 weeks now, my levels before we’re 214 (range 200-900). My Neuro believes the low B12 is the cause of my neuropathy.....only 21. Nothing makes sense....
I personally will go with acupuncture before even thinking about considering any sort of antidepressant ever again in the future. I did have good luck with one for about 6 months before my temperature regulation went haywire until I stopped taking it however. Good luck ...
If the ranges are the same as in your opening post TSH (0.27-4.2) and Free T4 (12.0 - 22.0) you are overtly hypothyroid with FT4 below range and TSH over range.
Ask your GP receptionist what your vitD level is and I'll let you know whether 2,000iu is enough.
I posted results in an extremely tired state, mainly so I knew what to ask at docs tomorrow morning.
The wave finally crested a couple of days ago, so am experiencing a lot of the symptoms first hand rather than on the back of other meds. The worst for me at the moment, is the frostbite feeling in the tips and first and second joints of the fingers, never felt this so much before, had it in perhaps 2 fingers at most, with swollen feeling and lack of sensitivity in tips. Now its all of them, and takes a while to realise that what I was touching is hot. Even a small drop in temp, magnifies it quite drastically that I seem to be wearing gloves all the time. Makes doing any thing very painful.
Also having a dense pahse, I won't auto correct this, as it might hel[p to understand what Imean. silly typos and spelling mistakes. and not quite being able to grasp what im reading. I jaust sat for 10 mins reading the same sentance but not being able to complete it.
Will have a few more details tomorrow morning, and will ask about exact results.
yes they are swollen, the top section, nearest the back of my hands is red and itchy, the tips are tight, and feel like they are on fire, but they are cool/cold to touch. Some have no sense of touch, yet others tingle. I feel cold items very quick, but hot things take time to react to. Grip is impaired and I have difficulty holding on to small items, they tend to slip through my fingers.
It was due to the list that I started to question my docs judgement. There were to many coincidences, and as he wouldn't take me seriously and blamed the change, not enough exercise, mental imagination, etc, stopping all meds seemed the best way to finally sort it all out and get the right help.
Ask your doctor whether they could be chilblains. I've been plagued with the damn things for about 4 years during the winter. Antihistamines help reduce the itching.
Unfortunately, doctors are very dismissive of symptoms when they think thyroid levels are 'normal'. Back in 2013 I stopped all my meds too in order to figure out for myself what was making me unwell. I did have to resume thyroid meds after a few weeks but with different meds and supplements to correct vitD and folate deficiency I became well.
that's what I am hoping for. There was so many other things, both mental and physical going on, with interchangeable symptoms that you couldn't be sure which was causing what.
Okay, After 2 weeks I would reduce dose to 2,000iu and retest after 8 weeks. Make sure you take vitD 4 hours away from thyroid meds when you resume taking them.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
Strongly suggest you do this ASAP before you are going to have to restart Levothyroxine
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
When hypothyroid LOW stomach acid is very common
This has almost identical symptoms to HIGH stomach acid. Treatment is very different
Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL
You MUST NOT just stop PPI's. They must be weened off very slowly and alternatives started
Also worth looking at digestive enzymes in general, not just Hcl, esp ones that contain lipase as we often get bad at digesting fat - even more likely if we've been told to go on a high carb low fat diet.
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How do you know if your dose of Levo is right - I'm on 50mg 4 week trial extended to 8 weeks as I feel no better - Doctor treating symptoms
