Latest blood test - am so discouraged - overmedicated to undermedicated

Hello again. Am beside myself on trying to figure out what to do. Very long story short, I was overmedicated and very ill for most of 2018 and diagnosed Jan of 2019 with "iatrogenic hyperthyroidism". Per doc, stopped my thyroid meds and numbers have stayed in range on NO meds since Jan 2019 - not optimal, but in range since Jan of 2019. I had severe hyper symptoms through 2018 and most of 2019 (hyper symptoms: feel like the flu, multiple bowel movements, fast pulse, head pressure, terrible weakness, acne "bumps" on back of head, --horrible!) but those symptoms, in fact, finally faded and now symptoms are mostly standard hypo symptoms (normal fatigue, hair loss, lower blood pressure/pulse, tingling in lower legs, carpal tunnel, aches/pains, woozieness) which are the same hypo symptoms I felt when TSH initially went to 6.0 (.5 - 4.5) back in 2014 when I started a low dose of 75 Synthroid.

So, i have had no thyroid meds since Jan 2019 and numbers have stayed in range... barely. Other factor is I went gluten free due to stool test results in early 2018 which I am sure has had some effect. (fyi it 110% solved MYconstipation problem). Also, I did have TPO Antibodies of 129 but after going gluten free that number has always been in range (less than 10).

Doc explained once overmedicated it is 12 - 24 months to recover. I am now at 18 months. Days or more tolerable since the hyper symptoms have finally faded, but now feel pretty hypo. Many of you know - there is nothing like severe fatigue and this type of unwellness to teach you patience. I have not been bedbound, but many days have been a real struggle.

The problem is over the last few months I have twice tried to start meds again as doc agrees my labs show subclinical hypo (see labs below) and he is ok with me trying meds again - but when I start with 25mcg Synthroid within just TWO DAYS my "hallmark hyper" symptoms rush back (immediately I have an acne bump(s) on back of head, head pressure and can feel my pulse in my head, multiple bowel movements, and the same terrible weakness awful fluish hyper feeling). These hyper symptoms are very different and horrible than the hypo. So I have to stop the Synthroid after a couple days as I cannot live feeling THAT sick!

I do have an appointment with Dr. Theodore Friedman, Los Angeles, CA at the end of September and anxiously await his input (I'm from the US), and I have seen his name mentioned on this forum several times and he is supposed to be really great. By the way, does anyone know any other doctors in the US who stand out as really great thyroid specialists who are MDs?

Anyway, I want to thank the moderators on this site. You are heroes in my book - I read this site every day and have learned so much and have gotten so much comfort out of that knowledge.

Thank you for any input on why I am not able to take a small dose of Synthroid without unbearable hyper symptoms raging back! Perhaps I am still healing as my doc says.

Labs August 2020:

TSH: 4.26 (.5 - 4.5)

FT4: 1.0 (.82 - 1.77)

FT3: 3.0 (2.0 - 4.4)

Rev T3: 9.9 (9.2 - 24.1) (note, was 24.4 after a year on Armour in 2018 and feeling so ill)

RT3 Ratio: 30 (>20) (note, was 12.0 after a year on Armour in 2018 and feeling so ill)

TPO: 9

TG antibodies: <1

Homocystein: 15.8 (<14.5)

Vitamin D 25H: 52.9 (30-100)

Vitamin B12: 426 (232-1245)

Ferritin, Serum: 50 (15 - 150)

Iron Bind Cap: 306 (250-450)

UIBC: 204 (131-425)

Iron: 102 (27-159)

Iron Saturation: 33 (15-55)

Coritsol blood test: all normal

[humanbean]

During the time you were over-medicated your body may have burned through lots of your nutrients, and they may be too low for you to feel well. If you could get some testing done for vitamin B12, folate, vitamin D, ferritin and iron and then post the results with their reference ranges it might show up a cause of your intolerance of thyroid meds now.

In addition to, or instead of, low nutrients being the cause of your problem, your cortisol may have gone into overdrive. You could be producing far too much, or far too little, for good health. Either of these situations could make you feel very hyper when you take tiny amounts of thyroid hormones.

The best test of cortisol is a saliva test requiring you to provide four samples throughout the day. Ideally the test would also include a test for DHEA, would not use reference ranges which allow for zero to be a healthy level, and the test should also be capable of testing very small amounts of cortisol (which you would expect to find later in the day), rather than saying you are producing (for example) < 1.0 with a reference range of < 1.5 which is useless and uninformative.

You can find some info on testing companies in the US that deal with patients directly on this link :

stopthethyroidmadness.com/r...

Find where it says "PLACES TO ORDER YOUR OWN TESTS", and read all the info very carefully. Some states in the US won't allow patients to do their own tests without involving a doctor.

I'm sure there must be other testing companies in the US that deal with patients directly, but I don't know of any more lists than the one provided by STTM.

[Hidden in reply to humanbean]

Humanbean, thank you for giving me these things to think about. I did edit my post and added my recent nutrients testing which I will add here. I did saliva cortisol back in 2017 previous to the severe overmedicatoin and it was normal, but I am going to check your link and have that testing done again. I've recently done blood cortisol testing and it was normal as well. I have just started on Vit D and a B12 to bring those numbers up a bit. Also bit the bullet and added dairy free to gluten free - am told by several docs that some studies are showing dairy is as bad or worse for Hashi's people as gluten is. Thank you again for your response.

Vitamin D 25H: 52.9 (30-100)

Vitamin B12: 426 (232-1245)

Ferritin, Serum: 50 (15 - 150)

Iron Bind Cap: 306 (250-450)

UIBC: 204 (131-425)

Iron: 102 (27-159)

Iron Saturation: 33 (15-55)

Coritsol blood test: all normal

[humanbean in reply to Hidden]

What are the units of measurement for your vitamin D result? If the units are ng/mL then your result is very good. If the units are nmol/L then your result is inadequate.

To work out the dose of vitamin D3 you need, if supplementation is required, this link is helpful :

grassrootshealth.net/projec...

Please note that to make the most of your vitamin D you also need to take vitamin K2 and magnesium. Search the forum for replies on thiese subjects. SeasideSusie is very knowledgeable on everything to do with vitamin D, magnesium and K2. You can read her replies to others here :

healthunlocked.com/user/sea...

Vitamin B12 : Yours is too low. With the reference range you've been given I would suggest you aim for the upper half of the range which is roughly around 700 - 1250. A good supplement for B12 is methylcobalamin which is easily sourced from supplement websites and Amazon. A good dose would be around 1000mcg. Take it once a day for a couple of months then retest. You might need to continue taking it to maintain your level, but perhaps only take it once or twice a week.

Folate : You haven't given a result, but the body needs folate to make use of the B12 you have. See this link for more info :

chriskresser.com/folate-vs-...

Optimal for folate is upper half of the reference range. If the folate range is something unhelpful like > 3.89 ug/L then I would suggest aiming for around 20 ug/L. The best supplement is methylfolate or 5-MTHF or Metafolin. It can be found on the same sites as the B12 I mentioned.

The other results you give are all iron-related.

Optimal results for iron are given in this link :

rt3-adrenals.org/Iron_test_...

Ferritin should be approximately mid-range for most people to feel at their best.

Ferritin, Serum: 50 (15 - 150) 26% of the way through the range

Iron Bind Cap: 306 (250-450) 28% of the way through the range

UIBC: 204 (131-425) 25% of the way through the range

Iron: 102 (27-159) 57% of the way through the range

Iron Saturation: 33 (15-55)

Ideally your ferritin would be around 80 - 85, so it is a bit low, but not dramatically so.

Your iron binding capacity is quite low suggesting you have sufficient iron.

Your iron is already optimal, and your saturation is within a whisker of being optimal.

I would say that your iron is generally very good and supplementing would be a very bad idea. (Excess iron in the body is poisonous.) If you want to incorporate more iron into your diet, in the hope of raising your ferritin, then this website is worth browsing :

dailyiron.net/

[Hidden in reply to humanbean]

Humanbean - thank you so much for adding the %ages. Sorry for delayed response I had some long hours the last couple days.

What are the units of measurement for your vitamin D result? If the units are ng/mL then your result is very good. If the units are nmol/L then your result is inadequate.

My Vit D is ng/mL so I'm good there. I do take Vit D w the K so I think I've got that right.

Doc did just get me started on the kind of Vit B12 you mention above so should see that number go up.

Am going to work on getting some of these midway through range and hopefully continue to heal from the overmedication. Hoping my thyroid numbers will improve and I have one doc who says over time I might go back to normal thyroid function without meds, but time will tell.

In the meantime, do you recommend anything else I might take to help my thyroid along like Selenium?

Thank you I am most grateful for your time on this.

[humanbean in reply to Hidden]

Lots of people with thyroid problems take selenium.

Some people say that selenium is found in brazil nuts. But that is only true if the nuts were grown in selenium-rich soil. The nuts should mention how much selenium they contain. If it isn't mentioned then they probably contain no selenium at all. If you take selenium-rich brazil nuts, you shouldn't need more than a couple a day.

Since I'm a bit nuts about nuts, I don't use brazil nuts to get my selenium. I'd just eat the whole bag, and they aren't cheap. So I use supplements. I take a dose of 100mcg selenium per day. The maximum tolerable dose per day is allegedly 200mcg. Personally, I couldn't tolerate that much, which is why I take the lower dose.

There are some forms of selenium supplement that are better than others. I can never remember what the best ones are. SeasideSusie will know.

[SeasideSusie Remembering in reply to Hidden]

Selenium l-selenomethionine or yeast bound selenium are the most absorbable.

Avoid selenite and selenate forms.

As for Brazil nuts, I'm like Humanbean, I can't stop eating them once I start. If you do want to use Brazil nuts, other members have kindly advised the selenium content declared on the following:

Apparently Sainsburys SO organic brazil nuts contain 50mcg selenium per 30g serving of nuts

sainsburys.co.uk/gol-ui/pro...

and their Fairtrade ones have 75mcg selenium per 30g serving

sainsburys.co.uk/gol-ui/pro...

One member has said that M&S Natural Brazil Nuts say "harvested by hand in the Amazon forest and naturally high in selenium" but doesn't give the amount per nut.

Also, check out Aldi's "The Foodie Market" Brazil nuts, the packaging is said to show selenium content as 79mcg per 30g serving.

Another one is 'My Garden of Eden' Brazil nuts from Home Bargains.. They say "High in Selenium and high in vitamin E" on the front of the packet and the Nutritional Information says "one serving (25g) gives 63mcg of Selenium".

Too much selenium over time can cause the following:

Garlic breath

Nausea

Diarrhea

Skin rashes

Irritability

Metallic taste in the mouth

Brittle hair or nails

Loss of hair or nails

Discoloured teeth

Nervous system problems

[Hidden in reply to SeasideSusie]

SeasideSuzie thank you you are so kind to respond! I will be buying some Brazil nuts that show the selenium content and give that a try I'm not a huge fan so we'll just eat one or two a day. Thank you you and the others give such a valuable input I appreciate it!

[Leuy]

Hashimotos Disease is unpredictable in some people.

I couldn't take thyroid replacement hormone for 10 years due to the hyper/hypo syndrome you describe.

Eventually the thyroid dies off and you become hypo. Then you can tolerate thyroid meds but you can still have bouts of hyperthyroidism even while being medicated for hypothyroidism. They call it flush syndrome.

Then all of a sudden even a small dose of meds makes you very hyper. Its stop and start for years. Then you become very hypo and meds are tolerated better.

Then on occasion you will flush and the dose is too high. It's very unpredictable. It's also quite miserable.

It took ten years for me to tolerate thyroid replacement and I still have occasional flush syndrome.

I have to reduce the dosage even if the TSH is higher than recommended.

I've been on thyroid replacement 10 years now but I still have to go up and down o. the dose.

I keep my TSH higher than recommended 10-15 because too much medication puts me in a hyper state and that feels worse.

They often reccomend thyroidectomy but I'd rather deal with titration of meds. In my case I'm not symptomatic with a higher TSH but many people are.

Eventually the thyroid dies off totally and you are medication dependent.

Eventually can Take years. Everyone is different. The rate of decline in function is different for everyone.

Your labs dont look too bad. I'm from LA but I dont know that doctor????

You have to go by how you feel. The numbers are just a guide.

Some people feel better with a higher TSH and some people feel better with a low TSH.

It's such a crap shoot. Docs are guides only and finding one that will work with you is the hardest part of the whole ordeal.

Hang in there. It will get better.

[Hidden in reply to Leuy]

What do you mean by "they often recommend thyroidectomy"? I have never heard that recommended for Hashimoto´s.

[Hidden in reply to Leuy]

Leuy, thank you, thank you, you have no idea how much comfort your comment has given me. This has been so horrible! No one should have to suffer this much! Can I ask, did something in particular kick off your hyper/hypo "flush" syndrome starting? My story is so long. Back in 2018 I switched to Armour and that is when the mild hyper symptoms started (and looking back that is when ReverseT3 started going up) so I had to go back to Synthroid, I then had a functional doc add a massive dose of T3 to my small dose of Synthroid and didn't monitor me! For 6 months I got sicker and sicker and finally realized it had to be my thyroid meds, checked my blood test to find overmedication. OMG! Then brand new MD doc (who is well respect in the midwest) slowly took me off all thyroid meds and said it takes a very long time for body to recover. We are in the "wait and see" mode but it scares me that my labs show pretty high TSH/low FT4 and I feel pretty hypo but I can't tolerate ANY medicine - even one little 25 mcg will throw me back to the misery! Just wondered if something like that kicked off your flush syndrome??

I went back and analyzed every blood test and discovered early on when hyper symptoms were starting but labs were normal my Reverse T3 was high. It has taken 2 years for Reverse T3 to come down to a good level. Do you monitor RT3??

My homocysteine is high just out of range and doc says from inflammation of what body is going through - any thoughts on that?

Yes I read Dr. Theodore Friedman is an incredible doc - he is a researcher doctor affiliated with several hospitals in LA area including Cedars Sinai. He is a world expert on Cushings but also deals with tricky diabetes and thyroid issues. It takes months to get in - I have waited since April to see him.

Thank you again for your email. I AM feeling better and can most days get through my day but can't workout yet - just feel too sick/weak/woozie if I try hard stuff. I went from being the strongest 57 year old in the Crossfit class to a pale shadow of myself. I also notice I'll go on a decent streak for a few weeks then BAM I have a few really crappy days.

LA is beautiful I worked there quite a bit in the 90s. Thank you again for your kind reply.

[jpar in reply to Leuy]

It's good to hear about someone else who does better with a higher tsh. If I get anywhere near 2.5 and under I'm super hyperthyroid. I'm at 6.5 right now and I'm okay. I usually feel better around the 4 range. I did well for many years between 4-6. I'm wondering if she should try a different type of medication other than synthroid. I've just switched from synthroid to levoxyl because of allergic type reactions. Too early to tell if levoxyl is better but hoping for the best.

[Leuy in reply to jpar]

Hi

Actually...I was on 75 synthroid with a TSH of 2.0 and very hyper. My Endo said I can have a TSH from 10-15 and as it went up to 40(and I didn't feel bad at all) I'm titrating to get the TSH in a reasonable range.

They used to say if you have Hashimotos the TSH should be 1-2!!!!! And they would increase the meds and I would drop out and get sick!! Twice I was overmedicated and became very hyper. Horrid experience. Also as people get older a lower dose and a higher TSH is acceptable. I felt so wonderful at 40 iwould have said leave it but it wouldnt last.

Eventually I'd become hypo at that TSH.

I see people always wanting to increase their dose. Its different for everyone. I have a friend that keeps her TsH at 00.00!! She said at 2.0 she is hypo.

I'm switching to low dose Armour 15 mg next week after blood work.

Synthroid gives me tinnitus palpitations HR 90s and a migraine at the 3rd hour after taking it. Generic levothyroxine does the same.

I've had people tell me they keep their TSH around 8.9.10 and they feel better. It's so different for everyone. It's a matter of finding what's best for you. Doctors are guides not the law.

Alot of people are into vitamin supplementation but I only supplement if I'm deficient. In my world...less is more. Too many meds and supplements can make you sicker than the Hashimotos so I'm careful.

Thyroid is the only medication I take at this point. I do the gluten free diet cuz Endo thought helps. Ok?? Its not that bad.

It's hard for people to find their sweet spot but after that Hashimotos is manageable.

Hang in there!

[Hidden in reply to Leuy]

Fluey very reassuring to hear someone else say they feel good with TSH a little higher! I agree with you completely on the supplements throughout the last year trying to recover from the overmedication I've tried several different supplements that I really did not need because I wasn't deficient just trying to boost them but you're right they generally brought on symptoms that are as bad or worse than the others! Just two weeks ago thought I would try some tumeric as it's supposed to be so good for tingling and a lot of other things but it just made me kind of dizzy and nauseous. Thanks again for taking time to respond and share your info!

[jpar in reply to Hidden]

I've been exactly where you're at with being hyper because I kept being overmedicated for my body. Doctors were just going by numbers and not listening to me. Every body processes and detoxes drugs differently and I think as we age it gets harder. I just went to a new doctor because my Doc that was so good at listening to my symptoms and not such a stickler on numbers just retired. The new doctor that I'm seeing is in his office and she switched me from synthroid to levoxyl. I took 75 mcg for 20 years with no problems. About 10 years ago things started to go bad after a hysterectomy and aging. I went through several years of doctors upping my dose constantly and trying other meds like T3 and it was like taking speed! It was bad for me! I had 2 thyroid storms. Some of the symptoms that I had were severe insomnia, heart palps, high blood pressure, vision problems, high heart rate, migraines, etc. It took a couple of years to come down. Anyhow, lately I still have some side effects so by process of elimination I think the synthroid itself it a problem and based on patient reviews over the last five years it seems that something has changed with this brand. I just started taking levoxyl four days ago, but so far its seems much milder and less side effects. Not sure if its going to work out long term or not, but maybe you can give that a try? And start low and go slow. But to be honest I wish I never had to take anything and live well with out it. I guess I can dream, lol!

[Hidden in reply to jpar]

Jpar thanks for your comments. I first noticed my symptoms 3 years ago when I tried armour and then went Gluten free which caused more absorption and felt sicker and sicker ... insomnia, multiple bowel movements, awful head pressure and pains, acne felt like the flu just horrible! In the beginning only reverse t3 was out and finally a doc figured it out... said its 1 to 2 years to heal! anyway almost 2 years later and I am still healing. On no meds and numbers in range but some days are much better now. It's a journey!

[HLAB35]

Sounds as though your Hashi's was going through an extended hyper phase and now you're hypo.

Glad going gluten free did the trick with the antibodies. Humanbean makes a very good point about adrenals. Too much or too little cortisol can prevent proper conversation of Levo to t3.

I also note that you've got over range homocysteine - not a good thing. This is a common problem in people with a MTHFR mutation (seems to occur a lot in Hashi's). This affects your absorption of B vitamins- specifically, B12, folate and B6. Low cellular levels of these three will raise homocysteine. Try to find a nutritionist or functional doc who knows about this problem. A good one will probably recommend some absorbable forms of these three vitamins.

I note you live in the States where they fortify flour with folic acid. This is bad news for many people with a MTHFR defect. In fact, your going gluten free may have helped in more ways than you thought.

You firstly must get your folate levels assessed before supplementing. Your B12 is really too low (levels below 500 can cause neurological issues). Also, you should probably try using some p5p instead of pyridoxine HCl (B6). These 3 B vitamins, plus minerals like magnesium should help lower homocysteine.

ncbi.nlm.nih.gov/pmc/articl...

[Hidden in reply to HLAB35]

Hi HLAB35 - thank you thank you for your response. They "hyper" phase was caused by a doc adding a massive dose of T3 and not monitoring me for months. Bloods went out of range and I became sicker and sicker!

I am concerned about the homocysteine being out of range. I tried a good B Complex a few months ago but, believe it or not, it brought back the hyper symptoms! Doc wasn't surprised so we are now going to try just some B12 (I do have the tingling in lower legs and meralgia paresthetica). I thought we did a Folate test but I don't see it. Will get that done next week. So am I reading your note correctly - I should look at taking B12, P5P and Folate plus the magnesium?

I've been thinking about doing the test to find out about the MTHFR gene and have gathered info on this - do you think that's a good idea?

Thank you so much for your response.

[HLAB35 in reply to Hidden]

Magnesium could help with hyper type symptoms. I'd have palps / insomnia / anxiety / cramps / headaches etc when HYPO due to low Magnesium. To test for Magnesium you'll need an RBC test (hardly ever done) as serum tests are misleading. It'd be worth looking at Dr Carolyn Dean's books and blogs on Magnesium deficiency symptoms.

Some people don't tolerate B12 (methylcobalamin) when they're deficient - too much of a shock to the system and do better on adeno or hydroxycobalamin. This can also be due to a variant of MTHFR. There are also some people who require folinic* acid instead of methylfolate for a similar reason. I'd really try and figure out what's going on with that, because it may be key to sorting out a lot of neuropathic issues you're getting as well as the high homocysteine.

*Not a typo - 'folinic acid' is still more natural than 'folic acid' which is completely synthetic.

[Batty1]

Lol Scrumbler

[cyndig197436]

Im new at this ive been miserable for years not knowing why but I didn't go to a dr regular either.my Dr just recently diagnosed me as hypo after 2 years of feeling so sick cant get out of bed tired all the time in the worst pain and tingling everywhere feeling like skin crawling. I wondered for years why I had so much energy that it was scary my heart would beat 150 miles an hour it seemed and I would talk all the time feeling like I just took a bunch of caffeine pills.stomach stayed sick couldn't eat 😪 make long story short finally got diagnosed hypothyroidism I think i get confused by the 2 but my dr put me on 50 mg of levothyroxxine and it seemed like I started feeling better than all of a sudden I got to where I couldn't stay awake felt drunk and it seemed it started making my tingling and pain worse so I stopped taking it.Ive felt the best ive felt in a long time this week but im starting to feel my heart race and that feeling of skin crawling im so sad that this is happening please help 😢...

[humanbean in reply to cyndig197436]

It would be better if you copied this post into a new thread rather than hijacking sroth's thread and getting people confused about who they are answering.

To create your own thread you need to click on the blue button with "Write" on it. On my PC it appears near the top of the page. I don't know where to find it on a phone.

[Hidden in reply to cyndig197436]

cyndi - hang in there it sounds like you just need to get your meds adjusted. I have had tingling in my lower legs for over a year as I try to get straightened out.