Suddenly high TSH

[jstein1979]

Hoping some of you good people can give me an idea of what might be going on. I'll keep the brief:

2014: diagnosed Hashimoto's started low dose T4.

2017: frustrated from constipation/IBSc endo switched me to Armour Thyroid and started feeling unwell on and off (standard fatigue, aches pains, acne) and 6 months later became really unwell. In the mean time went gluten free.

2018: doctor thought I needed more T3 so aded 20mcg Cytomel to 75 Synthroid and did not monitor my blood work - I became overmedicated for 8 months and very sick. Back then I didn't know to monitor myself so I am part to blame.

2019: new endo started taking me off meds and labs stayed barely in range - took me off ALL med for TWO YEARS with labs barely in range saying symptoms were from being overmedicated and it was a matter of time to feel better. Thought I was going to die every day. Looking back I cannot believe I hung in there for 2 years.

2021: early this year new functional doc found SIBO (small intestinal bacterial overgrowth) and extreme histamine intolerance which absolutely contributed to symptoms - histamine intolerance is horrible very very unwell much like being hypo. Even though thyroid labs were barely in range I started back on small dose of thyroid med and learned I absolutely could not tolerate any form of T4 - my symptoms would skyrocket and literally become debilitating in matter of a week when I tried taking it. BUT, I found I could take a small dose of T3 (10mg) which I started in MAY this year and along with supplements for the SIBO as well as a low histamine diet I started to finally feel better. Labs weren't great but doc says most likely would improve as gut improved so we kept the T3 at 10mg. Labs weren't great:

JULY 15:

TSH: 3.2 (.45 - 4.5 ulU/m)

Free T4: .8 (.7 - 1.5 ng/dL)

Free T3: 2.4 (pg/mL (2.0 - 4.4 pg/mL)

SEPT 24:

TSH: 2.0 (.45 - 4.5 ulU/m)

Free T4: .8 (.7 - 1.5 ng/dL

Free T3: 3.0 (2.0 - 4.4 pg/mL)

Now all of a sudden after I am finally feeling a good bit better treating the SIBO and eating low histamine diet w no gluten, no dairy, no sugar, no egg my numbers are worse than ever! Even at the start of my Hashi's my TSH only got o 12. I am in tears!

DEC 20:

TSH: 44 (.45 - 4.5 ulUm) (I about fell over when I saw this number)!!!!!!

Free T4: .14 (.8 - 1.77 ng/dL)

T3: 43 (71 - 180 mg/dL) (They were supposed to test FREE but didn't

Any ideas at all what is going on? All my symptoms (and there is a long horrible list of them) started and got severe after switching to Armour back in May of 2017 - theory is I had IBS-C and severe stress - a perfect storm for histamine intolerance and SIBO to start and perhaps somehow in my body the Armour was a last straw as my RT3 shot up very quickly after starting it so something weird was going on. Low histamine diet has been a tremendous help -- histamine overload can truly cause debilitating symptoms much like being hypo which is what made drs solely focus on thyroid for 3 years. Have also developed a severe methy donor (folate, B12, etc) intolerance because they can quickly raise histamine. And also I have the T4 intolerance. I am so upset. Working with a couple great docs and a geneticist to get system back on track but any thoughts on the thyroid sudden change for the worse?

Nutrients good doc regularly tests all including folate, ferritin, B's, D, A, other minerals, etc.

[SlowDragon Administrator]

Well someone on just T3 is likely to need at least 30-40mcg per day …..often more like 60mcg per day

Usually split as 3 smaller doses per day

Nether levothyroxine or T3 “top up “ failing thyroid…..they replace it

On just T3 40mcg to 60mcg might be typical …..a few people need less, a few people need higher dose

On just levothyroxine typically eventual dose is around 1.6mcg per kilo of your weight per day

[jstein1979 in reply to SlowDragon]

SlowDragon - thank you so much for the reply. I am thinking well maybe I just need more thyroid med - but odd I went since early 2019 with no med and TSH is just now jumping up so high. Waiting to hear from doc and see where this goes. I am so grateful to have this group to fall back on when I don't feel I can get a good quick answer anywhere else.

[greygoose]

Well, given that you don't take any T4, and they tested the wrong T3, the only result you have there, really, is the TSH. And, that is very suspicious! To go to 44 from 2 in just three months is very unlike TSH. It doesn't usually move that fast. So, I would suspect laboratory error, there. It happens more than you might think. Could be anti-TSH antibodies. Or, something you're taking affecting the result. Do you take biotin in any form, one of the B vits? Either in a multi-vit, or a B complex, or by itself?

I think what you absolutely need is a retest - preferrably with FT3 this time - and, if possible, in a different lab. If you still get a high TSH, then you're going to need an increase in dose. But, verify that result first.

[jstein1979 in reply to greygoose]

Greygoose - don't take any Bs now due to this methyl donor intolerance I've developed (told this intolerance is common with my histamine/SIBO issue as Bs and folate increase histamine). Histamine overload is truly no joke 😳. I wondered if the results could have been a mistake. Yes have a frantic call into my doc. Can't say thanks enough always appreciate your feedback.

[greygoose in reply to jstein1979]

You're welcome. Let us know how you get on.

[Pbsc in reply to greygoose]

I am learning so much useful info here - ordered the vitamin D spray yesterday and I have Covid right now, so I’m so grateful for all this good info. My multivitamin contains biotin, is this a major concern regarding TSH?

[greygoose in reply to Pbsc]

It's a major concern for all blood tests if biotin is used in the testing process. And, we can't know if it is or it isn't without asking first.

But, you shouldn't be taking a multivitamin anyway for all sorts of reasons.

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, etc. These things should be tested before supplementing.

* Copper and zinc need to be kept balanced, but hypos are often high in one and low in the other - often low in zinc. So, both should be tested before supplementing. Taking either of them when you already high in it, will reduce the other and make you feel worse.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.

*Vit C should be taken 2 hours away from B12 because it affects how the body uses B12.

*Never take magnesium/zinc/calcium at the same time as they affect the absorption of each other.

*Take zinc and copper separately as zinc affects the absorption of copper, if you need to take both.

*Vits A/D/E/K are all fat soluble vitamins, and if taken together can compete for the source of fat. They are best taken away from each other.

* The magnesium you take - and just about everybody needs to take it - should be chosen according to what you want it to do:

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D.

[Pbsc in reply to greygoose]

Grey goose I am in awe of your reply! How do I save this?

[greygoose in reply to Pbsc]

Well, you could copy and post it into a word document, if you're on a PC. Or, you could save the whole post by clicking on 'Save' under the main post at the top of the thread.

[RMFrum]

Did you recently have any testing using contrast or radioactive dye? (CT Scan, heart cath etc.)Any of those things will cause your TSH to shoot right up.

[jstein1979 in reply to RMFrum]

No I didnt have anything like that. I have just been treating the sibo with supplements and eating super healthy low histamine diet since May. I was actually hoping my thyroid Labs would be better and not much worse so quickly.

[Audley1013 in reply to RMFrum]

MRI Contrast too?

[BrynGlas]

I am on T3 only, jstein1979, self administered because my GP was a nutcase who told me that T3 was illegal, I was instructed to never say that/those words when speaking to him again! Talk about narcissistic tendencies!!!

If I had that result in a test result, I would immediately up my T3, but you need to do that very gradually.

I keep a couple of T3 in my handbag in case I am in need, but so far I haven't had to use them.

[jstein1979 in reply to BrynGlas]

Thank you so much for your reply my functional doctor call yesterday and said I do need more T3 and start with a tiny dose since I am Ultra sensitive due to the sibo and histamine intolerance. When you say go up by a small dose how much do you mean? I'm only increasing 2.5 mg. I don't care how long it takes I just don't want to feel worst from the increase.

[jstein1979 in reply to BrynGlas]

Can't believe your doctor said it was illegal that is crazy! I am in the US and it is totally not illegal here I have had a couple doctors over the last few years who work with T3 if needed. Don't listen to that nonsense!

[Rachel357]

Hi, how are you now with regards to the histaminite intolerance? I have it too and I'm struggling with the diet as I'm underweight and it's making me lose more weight. Have you managed to increase your T3 dosage at all?

[jstein1979 in reply to Rachel357]

Hi Rache357 - good to hear from you! And I can say that after 2 months on the biphase diet (designed for SIBO and histamine intolerance) AND working with my functional doc taking a number of supplements AND have worked my way up to 20mcg a day of T3 that yes I am feeling overall better. Between the extra T3 (which I needed after my thyroid really tanked a month ago!) and the bi phase diet I have lost another 6 or 7 pounds and I am underweight and trying NOT to lose more! I do eat lots of coconut oil and olive oil for fats. But something is working - not sure if it is the supplements, or extra T3 (which I probably even need more we are monitoring) or the diet - but finally after 4 brutal (and I mean horrible) years I am finally having days that are better - not normal! But better where I don't spent every second wondering why I feel so horrible and having ZERO social life. I still have fatigue, especially mornings, my head feels a little weird still, tingling and some twitching still, but better. I can even do basic exercises now and it doesn't feel like it will kill me! So baby steps! Hope you are doing ok!

[Rachel357 in reply to jstein1979]

That's good to hear! I was in hospital recently as my weight was dangerously low, so I keep having some medium histamine foods, but they are making me feel really ill. When you first started the diet did you find it hard preparing all the meals when you felt so ill?

[jstein1979]

Oh no - I am so sorry to hear that and hope you've made some progress! I know what you mean - if I eat something too bad the next couple days will be horrible. My symptoms always hit the next morning - it takes overnight for the histamine levels to go up - and I wake up feeling achy, fluish, head feels weird - just aweful so I understand! YES when I first started it was hard. I still ate out (carefully) but would bring with me my bag of coconut oil, coconut flakes, macadamia nuts - whatever I could put on a piece of plain chicken or baked potato. I started grilling a lot of beef and chicken ahead of time and freezing in individual bags. I ate the same things over and over and only now after a couple months am I introducting other foods and doing mostly ok. I can tell you I feel better (not normal) but it is bearable. And I will also tell you this - I didn't realized how puffy my eyes were until the puffiness started to go down - and I think that is completely from avoiding histamine foods! So yes very hard to keep up with this diet but feeling better made it doable. I miss pizza so much

[Rachel357]

Just seen your last message. I'm finding it really frustrating not being able to take any thyroid medication. I tried a tiny amount of T3 this week and after a couple of days I felt so ill, like I had flu and felt really panicky. It seems to worsen the symptoms. Did you have to wait a while when you started the diet, before you started taking T3?

[jstein1979 in reply to Rachel357]

Rachel that sounds exactly what happened to me when I used to try to take T4. By the 2nd or 3rd day I would notice I could hear a swooshing heartbeat in my right ear and that was followed by feeling fluish - horrible - just all over bad. This happens to me when I try to take folate or B12 as well. I think it is all histamine related - body reacting to things and causing inflammation and unwellness. It has taken FOUR YEARS to figure this stuff out (finding the right doc last May has been a HUGE help) and I still don't really know what is causing what all the time but i am much better most days. I think the supplements I'm taking has helped calm down my whole system. My homocysteine (shows inflammation) went from 23 to 15 in just a few months w new doc supplements. That shows huge improvement! Have you had yours checked? Anyway, no - for me I was able to take a small dose of T3 (which I have worked my way up from 5mgc a day to 20 since May). I do think one thing hinges on the other and somehow we have find some balance. My local functional MD/DO is actually working with a thyroid medicine that he uses when patients are so sensitive and system out of balance that they cannot take ANY thyroid med - fortunately the T3 is going ok for me so I didn't have to try it. I also just had my genetics done and it was eye opening - showing how my genetic make up really set me up to have this histamine/inflammation issue. Glad to share any info with you!

[Rachel357 in reply to jstein1979]

It sounds like you have been through a lot! I’ve been feeling like I was going mad for the past couple of years, as I couldn’t work out what was wrong with me and why I wasn’t getting any better. I think my histamine intolerance was caused by taking Ranitidine. Please can you PM me the name of your functional MD, as it would be good to find out about the thyroid medicine he is using? Thanks

[jstein1979]

Rachel - I too thought I was going crazy the last 3+ years - these horrible symptoms kind of came and went in the beginning but then full on while doctors mistreated me BADLY over thyroid and nobody ever looked any further. They do NOT KNOW ANYTHING about histamine or how it works. Hypothyroid increases histamine and increased histamine affects hypothyroidism - vicious cycle. I even went to the Mayo Clinic and was told I am normal while I felt so bad I literally thought I would die every day. Mine started after 4 - 5 months after I changed thyroid meds to Armour Thyroid and reverse T3 went way up (body is in hypo mode) - but the geneticist I'm working with (who is AWESOME and explained how my genetic make up predisposes me to NOT being able to break down histamine) said that usually it is women past menopause and these things that didn't bother us when we were younger catch up and things go downhill - could be any number of things - mold exposure, extreme stress, a really bad virus. And things just kind of stop working. Anyway - my local MD/DO is fantastic and literally saving my life and yes I will PM you his name now.