My TSH is 86.500 and free thyroxine 0.18.

[kjadmartin]

I have read so many posts on here, with people posting their levels and I have never seen anybody in high as what mine are showing. Is this like crazy high? Has anybody else ever had results as high as this on their TSH?

[Lalatoot]

Yes. I was like you. My ft4 was so low I was staggering and the drs were amazed that I was still able to function .It was very difficult to get started on levothyroxine as that seemed to make me feel worse.

Because of this I thought that levothyroxine was an added problem and that it didn't agree with me. I now understand that it was the inadequate dose that added to my symptoms rather than the levo itself.

The only way I could tolerate levo at the start was to split my daily dose. So initially I cut a 25mcg tablet in 2.

By splitting my dose I was eventually slowly able to increase to 50mcg x 2 daily.

[kjadmartin in reply to Lalatoot]

I think I'm going to do that I cannot go past 25. And I even struggle with that. I'm good the first maybe the second day but the third day it's just overload on 25. And I know that consistency is key. I'm going to try this splitting thing and see if it works well for me. Thank you for the reply!

[SlowDragon Administrator]

We do occasionally get members arriving with very high TSH, even over 100

Looking at your other post, you’re currently only taking 37.5mcg levothyroxine?

How long have you been on current dose

Bloods should be retested 6-8 weeks after each increase

If you find it difficult to initially tolerate a dose increase…..split the dose levothyroxine….so for example going up to 50mcg daily you could take as 25mcg waking and 25mcg at bedtime

Extremely important to get vitamin D, folate, B12 and ferritin tested and improve levels to optimal by supplementing if necessary

Unless extremely petite likely to eventually be on at least 100mcg levothyroxine per day

[kjadmartin in reply to SlowDragon]

37.5 is how much I've tried to go up to but I can't stay there. I can't go past 25 and I even struggle with that. Someone suggested to split it in half for a while in two doses. Thanks to this website I'm taking all the necessary vitamins and most of them I had already been taking anyways. The only thing that I stopped taking was my adrenal medicine because I'm scared to. But I'm pretty confident I need it. But I'm so scared to add any symptoms on because this is horrible.

[SlowDragon Administrator in reply to kjadmartin]

Try taking levothyroxine as 2, 3, or even 4 smaller doses spread through the day

Slowly, slowly increasing the dose

If you still can’t tolerate you may need propranolol prescribed alongside. This is beta blocker.

It will dramatically improve palpitations

(Can’t take propranolol if you have asthma)

Propranolol lowers adrenal need…..as blocks cortisol. It also slows uptake and conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Propranolol was the only way I could increase dose levothyroxine up over 75mcg ….to the necessary 125mcg …..even then it took approximately 2 years to SLOWLY increase (more on my profile)

[kjadmartin in reply to SlowDragon]

I wish I would have found this website 15 years ago. No one knew hardly anything and there wasn't a lot of support out there. Thank you so much for sharing what you know with me. I just wrote down this medication to talk to my doctor about.

[tattybogle]

yes TSH 86 is pretty well 'up there' , although you can occasionally find people still walking and talking with it at 100 . or even 150..... but a lot of people are already feeling significant symptoms long before it get's to 10.

anything over about 50 will usually make a GP sit up and take it seriously and act quickly .

sometimes high numbers like 100/200/ 300 are not a true reading, but are a result of technical interference in the lab process ( eg. there are things called HAMA ~ Human Anti Mouse Antibodies ,(yes really) which can lead to falsely high results)

......... but your high TSH looks correct as it is consistent with your extremely low fT4 results.

[kjadmartin in reply to tattybogle]

I have been in rough shape for years. I got a blood clot on my lung the circulation of my legs is shot. I would take a visit to the ER once a week. Luckily I finally found a doctor that would listen to me. I couldn't get anybody to listen to me. I almost died several times because of it. And this all affected my mental health severely.

Even my breathing was shot but I haven't used any of my six breathing medications since I started the Levothyroxine. Honestly I feel great if it wasn't for the heart palpitations. Luckily this website has encouraged me to take it slow and just keep moving forward the best I can and not be so concerned with making this a quick process.

[Hidden]

I am not a medical professional. I have just collated helpful information available on adrenals found in different, reputable thyroid help books. Adrenals do not get enough recognition for their essential role in the effective metabolism of thyroid medication. For some people taking thyroid medication is enough to get adrenals working again, for others it isn’t.

If you are having problems raising/tolerating/having no benefit from/feeling worse from your thyroid meds consider cortisol -

"At least 50% of hypothyroid patients may have an adrenal problem and without discovering and treating that problem you will be unable to benefit from thyroid treatment." (Stop The Thyroid Madness, Janie Bowthorpe)

"Low cortisol causes T3 to work less effectively within the cells. This is because T3 and cortisol are partners within our cells. High cortisol also causes problems and can reduce the effectiveness of T3 within the cells, hence thyroid patients with high cortisol often complain of feeling hypothyroid even when they appear to have reasonable or low FT3 levels. When patients try to raise T3 levels in the presence of low cortisol, they may find that the body compensates for low cortisol by producing more adrenaline. This can cause anxiety, rapid heart rate, the feeling of heart palpitations etc. This is usually the adrenaline response rather than a direct issue with the T3. Very often, it is the low cortisol that is at the root." (Paul Robinson website)

"Whatever you may be told, adrenal insufficiency in thyroid disorders is very common indeed and should always be considered at the onset of treatment. Failure to respond to thyroid supplementation, or actually feeling less well, is likely more often than not to involve the low adrenal reserve syndrome." (Peatfield “how to look after your thyroid”)

"If, upon starting NDT [or T3], you experience symptoms, including anxiety, insomnia, shakiness, sweating, dizziness, feeling spaced out it's a strong sign that you may need adrenal support." (Tpauk website)

Adrenal testing: 4 point saliva test from Regenerus Labs + synacthen test (if doctor will do it!) to rule out anything more than adrenal insufficiency. Blood tests are inferior to saliva tests because bloods show what is total, saliva shows free and therefore available.

Interpreting saliva results: Morning sample must be the number at the top of the range, midday must be 75% through the range, afternoon must be 50% through range and evening must be below the top part of the range. If anything comes up lower than this, then this indicates low cortisol. (If cortisol is high then this can be lowered through Phosphorylated Serine)

Low Cortisol Treatment (after testing):

According to STTM:

Adrenal Cortex Extract (not whole adrenal gland): On waking 150mg, 100mg at noon, 50mg afternoon, 50mg evening. After 5 days on those doses you can do DATS (Daily Average Temperatures) - Measure BBT 3 times; 3 hrs after waking, 3 hrs after that, 3 hrs after that and add them up to make an average, do this 5 days in a row avoiding ovulation & menstruation. If there is more than 0.2 degrees fluctuation between the temps then Adrenal Cortex Extract needs to be increased. Increase Adrenal Cortex Extract until DATs become stable. If DATs do not ever become stable then Hydrocortisone may be needed. STTM states 25mg/day is a starting dose, broken down as: 10mg on waking, 7.5mg at noon, 5.5mg in afternoon, 2mg before bed. If DATs still won't stabilise then this could indicate an Aldosterone issue.

According to Peatfield:

Adrenal Cortex Extract: Anywhere from 150mg to 600mg in the morning and nothing after midday. He also recommends 20mg of Hydrocortisone for those who are not improved by Adrenal Cortex Extract.

According to Paul Robinson:

Research CT3M (Nb. Many do not find this effective).

Nb. Initially cortisol presence can increase thyroid hormone uptake so much that you may feel over stimulated/strange. Some advise to lower thyroid hormone dosing to let thyroid hormones run down a few days before starting ACE to avoid this.

Adrenal Cortex Extract brands: Adrenavive, Thorne, Klaire Labs

[kjadmartin in reply to Hidden]

Being sick for so many years I find better information from people who have experienced it themselves then from doctors. No offense to doctors, they have a boatload of information they have to learn and it's just impossible for them to know from experience other than their own patients experience, and that's considering their good listeners. This website has been more helpful to me than any doctor ever has been.

[Hidden in reply to kjadmartin]

yes I agree - I’m confused by your reply as I said I’m not a doctor and have only quoted one doctor in my reply to you, who actually was struck off (!!) because he treated thyroid patients appropriately. Please consider cortisol. It could be why you are not tolerating the thyroid meds 🙏

[kjadmartin in reply to Hidden]

No I was just meaning that this website is so much more beneficial to me than going to the doctor. That's all I meant

[Hidden in reply to kjadmartin]

oh yes, fair comment 😊 please consider your cortisol! I just read your bio… it is a classic low cortisol response and being hypothyroid for as long as you have been you likely have very tired adrenals at this point x

[kjadmartin in reply to Hidden]

Do you know if it could negatively affect you if you take bovine adrenal if it's not something you're needing? Or should I wait till after I get my levels tested? I tried to research that online but wasn't productive and finding information on it affecting you negatively, if it's not something that you're needing or having issues with.

[Hidden in reply to kjadmartin]

I do feel you should test as high cortisol can stop thyroid hormone entering cells at all 🙁

[Hidden]

In low and high cortisol you can experience symptoms when raising T3. Low cortisol doesn’t inhibit cellular access it just means that thyroid hormone isn’t effectively metabolized because there isn’t enough cortisol to realise cellular glucose levels to make ATP. High cortisol stops cellular access altogether.

[Hidden]

yes, very mixed. This is worth reading

paulrobinsonthyroid.com/t3-...

IMHO STTM have the most patient experience and thus far I’ve found their advice to be the best, they seem to get the most people well, but they are sketchiest on science. PR has some good articles distilling the research but I wouldn’t use him for direct guidance.

[Sneedle in reply to Hidden]

Hi don'tforgetcortisol , just checking you are referring to adrenal issues only in your post above re STTM and Paul Robinson? As in, that's your take on these two sources as far as adrenals are concerned?Thanks.

[Hidden in reply to Sneedle]

yes that’s right 🙂 I think STTM give best advice for treating and raising awareness of cortisol in its role of treating hypothyroidism

[Sneedle in reply to Hidden]

Cool, thank you!

[Hidden]

I agree with you. It only recently occurred to me how much there is on hypo and how little on all other thyroid diseases. I guess in that sense I should count myself as “lucky” to have common old hashi’s.