Unable to tolerate sufficient Thyroxine, T3 or NDT - Thyroid UK

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Unable to tolerate sufficient Thyroxine, T3 or NDT

stephensmith profile image
65 Replies

Unable to tolerate sufficient Thyroxine to get well.

Have been trying for 4 years

Symptoms: Joint pain, Fatigue, Itching/tingling, Hot face/blotchy, Heart burn, Painfull underfoot, unable to tolerate one leg on the other when sleeping

On Thyroxine 75mg, tried one day a week increase to 100mg very unwell and increase in symptoms after 6 weeks

TSH – 5.4 (0.27 – 4.5)

FT4 - 11 (9 – 23)

FT3 - 4.2 (3.5 -6.5)

Ferritin 181 (22-322)

Calcium OK

B12 - 350 (211-911)

Vitamin D – 76.3 (20-100)

Blood pressure 135/81

Have tried T3 and NDT with assistance of understanding Endocrinologist and GP (rare beasts) – In all cases, only able to tolerate small amounts before being really unwell

Other medication

Statins (tried 2 months without, no difference in symptoms), have to take due to genetics

Testosterone injections

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65 Replies
Silver_Fairy profile image
Silver_Fairy

How have you taken the NDT and T3? Have you tried a combination of Levo and T3?

stephensmith profile image
stephensmith in reply toSilver_Fairy

Yes it was 20mg T3 split in two doses with 50mg Thyroxine

TSH – 2.2 (0.27 – 4.5)

FT4 - 8 (9 – 23)

FT3 - 4.8 (3.5 -6.5)

Tried then to increase Thyroxine to 75mg but went Hypo within a couple of weeks

Nanaedake profile image
Nanaedake in reply tostephensmith

Do you mean that you felt overmedicated rather than hypo?

mremeadows profile image
mremeadows in reply toSilver_Fairy

Ndt?

mremeadows profile image
mremeadows

Im wondering if the hormones they inject into our meat if its not somehow messing up our thyroids is it possible

helvella profile image
helvellaAdministrator in reply tomremeadows

mremeadows,

You are in the USA. Most members here are in the UK. Europe bans hormones being injected into animals for food.

Yet the story of thyroid issues is pretty similar both sides of the Atlantic. That doesn't exonerate hormone injection, but does rather suggest that most cases in Europe are for other reasons.

mremeadows profile image
mremeadows in reply tohelvella

Yea the us i leave that alone lol

Nanaedake profile image
Nanaedake

What about folate? Have you got thyroid antibodies?

stephensmith profile image
stephensmith in reply toNanaedake

Mmm Folate B9 ??. Never tested for this, appears to be related to anemia? I actually look as if I have a lovely sun tan (due to the hot face). Never tested for antibodies as assumed this would only diagnose if Hashimotos ??

Nanaedake profile image
Nanaedake in reply tostephensmith

How would you know if you had Hashimotos or not if antibodies not tested?

Angel_of_the_North profile image
Angel_of_the_North in reply tostephensmith

Has your cortisol been tested? Dark skin when not out in sun all day can mean Addisons

stephensmith profile image
stephensmith

My thought has always been that the treatment is the same, although if you had Hashimotos your thyroid output would gradually decrease. I have assumed that my inability to tolerate additional medication would not be related to if I had Hashimotos or not??

Nanaedake profile image
Nanaedake in reply tostephensmith

Well, even though your B12 is in range, 500 and above or near the top of the range is considered optimal. People with Hashimotos may have absorption problems which is why it's good to know whether you have antibodies. Gluten free is often needed to improve gut function. As B12 is low, I would check folate too.

For B12 and folate advice check out Healthunlocked pernicious anaemia forum for best advice.

Personally, I would want to rule out antibodies as it may have a bearing on symptoms and if you have one autoimmune condition you may be more vulnerable to another but if you don't feel it necessary then I expect your doctor will be happy to save money on tests.

If you feel better without thyroid meds then a TSH of 5.4 may be ok for you as everyone is individual and it may depend on a lot of other factors such as age, your genetics etc. Symptoms and how you feel are important factors too.

stephensmith profile image
stephensmith in reply toNanaedake

My plan of attack at the moment is to get as many Vitamin checks as possible out of my GP, but you are probably right about the antibodies. I am aware of gluten free as my wife is a Coeliac. I have tried to go without Thyroxine and only lasted one week, the joint pain was intense, to say the least. Most of my symptoms seem related to low (within range) B12, probably not low enough to get injections but might get strong B12 tablets on prescription. I am hoping that if I get level up then I can take more Thyroxine and feel better

SlowDragon profile image
SlowDragonAdministrator in reply tostephensmith

You can just buy sublingual B12 lozenges

Plus recommended to take good B complex as well

That would also improve low folate

Must remember to stop taking any supplements with biotin in at least 3-5 days before any blood tests

Biotin can falsely affect test results

Very many with Hashimoto’s have to supplement B12

Strictly gluten free diet likely to be necessary

Nanaedake profile image
Nanaedake in reply tostephensmith

Unlikely to get B12 tablets on prescription if in the UK as you are in range. Best approach as SlowDragon says is to supplement methylcobalamin sublingual tablets or oral spray 1000mcg per day and check levels in 4/5 months time. Also take a good B complex to keep the B's balanced. It will likely have some B12 in it so judge the amount extra you need in a separate sublingual form. Try to get a B complex with the methylated forms as they are the most absorbable. If in the UK, Thorn Basic B is a good option.

Supplementing magnesium is also a good idea. Magnesium citrate is ok but there are other choices for magnesium too.

naturalnews.com/046401_magn...

in reply tostephensmith

I now take NDT together with T3 not many people take this combination but it works well for me. Neither Levo or NDT alone worked.

mischa profile image
mischa

How are your adrenals. Low cortisol would be a problem in attempting to increase any thyroid meds.

stephensmith profile image
stephensmith in reply tomischa

Had an adrenal stress profile which showed 2 out of the 4 samples only just outside the tolerances

Nanaedake profile image
Nanaedake in reply tostephensmith

Take vitamin C to support adrenal function. You need a goodly dose, not sure how much so you could post another question. I take 1000mcg per day but you may need higher doses in the short term.

SlowDragon profile image
SlowDragonAdministrator in reply tostephensmith

Taking Levo at bedtime can help with adrenal issues too

Nanaedake profile image
Nanaedake

Do you mean 'acerola'?

nagasakih2o profile image
nagasakih2o

You seem in a similar position to me. I do however have Hashimotos but unable to increase meds (Levo / NDT / T3) to feel well. I've tried everything, had extensive bloods with TSH 5.2.

I'm on 250mcg Test injections every 18 days (libido etc is spot on so this is not the issue)

Can I ask what D3 supplements you take? One routine back in the summer that made me feel good was 50mcg levo eod & 75mcg levo eod, 3000iu better you d3 spray. Holland and barrett mag oil spray 15 sprays a day. Nothing else was used.....I felt great.

Nowadays, I seem to be going downhill. I have changed my d3 to lanolin so plan to return to the above protocol.

stephensmith profile image
stephensmith in reply tonagasakih2o

At the moment I do not take any supplements. This seems to be where I am heading at the moment. Just looked up D3 spray - Learning everyday

SlowDragon profile image
SlowDragonAdministrator in reply tostephensmith

Again lots on here use vitamin D mouth spray as it avoids the poor gut function

Magnesium often essential too and works with vitamin D

Barbsett profile image
Barbsett in reply tonagasakih2o

Hi, I recently read if you take D3 you also need to take K2. I can't remember the dosage but I read it was extremely important to use both.

SlowDragon profile image
SlowDragonAdministrator

Which one do you recommend?

Sounds interesting

JUNEHEALTH profile image
JUNEHEALTH

I experienced your symptoms but I overcame it for more than a year now. My dosage went up to 120mcg and the symptoms went away. I eat a lot more French lentil and quinoa, homemade chili. I play badminton at least 2 times a week, play pickleball twice a week, walk my pooch daily, swimming at least once a week. Now my dosage is 75mcg but my lab test has swung to the extreme left and right of the spectrum yet I am feeling great. What gives? I have not got a doctor to tell me what is wrong with my lab test. My doctor does not even answer my email. She has no clue with my hypothyroidism. ugh.......

stephensmith profile image
stephensmith in reply toJUNEHEALTH

I play golf 3 times a week and grandson keeps me busy 2 days a week. Did you just percivere to get to 120mcg, I started to feel faint and palpatations

E_lizab8 profile image
E_lizab8

Two things to think about, Statins can cause muscle problems, my husband had to stop them because of this. I have Hashi and even on levo had muscle aches until I went gluten free.

stephensmith profile image
stephensmith in reply toE_lizab8

Tried no statins for two months with no change. My wife is gluten free so if I decide to go down this road I won't need advice!

diogenes profile image
diogenesRemembering

Possible you may need liquid thyroxine. Maybe you are sensitive to pill fillers. Such patients are known.

stephensmith profile image
stephensmith in reply todiogenes

Is it prescribable?

humanbean profile image
humanbean in reply tostephensmith

Yes. For a list of the ones that have been approved by the NHS, see this page

bnf.nice.org.uk/medicinal-f...

and look for "Oral solution".

I would guess the reason no doctor has mentioned oral Levo to you is because they are very expensive compared to the tablets.

I never knew that my cherry tree was so healthy I freeze them and use all winter.

Clutter profile image
Clutter

RFU123,

600mg magnesium daily is a high dose. The RDA is 350-375mg. If someone is calcium deficient they should supplement calcium.

Stephensmith, if you supplement magnesium it must be taken at least 4 hours away from thyroid medication.

SilverAvocado profile image
SilverAvocado

The most obvious starting point is that these vitamin levels are okay but not optimal. It's worth trying to get them up just because that's a test book, obvious thing thf at applies to everyone. B12 should be 500+, and Vit D 100+. For the others I don't know enough to say, but generally you want at least halfway through the range.

It's interesting that the other person in the thread seems to have the same problem and also inject testosterone. All these hormones are linked, but you will be hard pushed to find any doctor or person that has good knowledge about these relationships :(

Although this problem comes up on the forum occasionally, and I'd always thought adrenal problems were the general explanation. This would be adrenal fatigue, not the more extreme form that you may get tested for in the NHS.

stephensmith profile image
stephensmith in reply toSilverAvocado

Had adrenal stress profile done and results were ok

SilverAvocado profile image
SilverAvocado in reply tostephensmith

Yea, that's strange :( So you must have a different explanation.

stephensmith profile image
stephensmith in reply toSilverAvocado

Due for another round of blood tests early Jan. Will see how many of the vitamin tests I can get, then take supplements to get to upper range. My main issue at the moment is the itching, this is like pins and needles and is clearly given as a symptom of b12 deficiency

SilverAvocado profile image
SilverAvocado in reply tostephensmith

Oh yes, apologies, I hadn't realised it was these more fiddly, allergy type things. I think the typical adrenal-type symptoms would be a feeling of being overmedicated while actually undermedicated.

Two very knowledgeable members have suggested liquid thyroxine. This can be prescribed but I think is hard to get. You'll need to get a doctor onside and interested in your problems.

stephensmith profile image
stephensmith in reply toSilverAvocado

Have a good gp and endocrinologist , so gp will be ok for a trial if I suggest. I always spend time preparing and knowing what I want. Pay private for endocrinologist but only see once a year or when needed. Name obtained from Admin on Thyroid UK

Clutter profile image
Clutter

StephenSmith,

I was just going to suggest liquid thyroxine too.

Cherry stones have arsenic in them as do apricot stones.It is bad enough trying to stone them all it takes for ever. I live in France and we don't seem to have to many blackbirds in our garden. Good idea for a heat bag good for you.

helvella profile image
helvellaAdministrator in reply to

Cyanide rather than arsenic.

Story on BBC from just a few months ago:

bbc.co.uk/news/uk-england-l...

Hidden

in reply tohelvella

Yes your right I got it wrong it's cyanide! Both bad for health I think.

humanbean profile image
humanbean

You wrote :

Had an adrenal stress profile which showed 2 out of the 4 samples only just outside the tolerances

This isn't enough info to tell us whether your levels are okay. Does "outside the tolerances" mean above the range or below the range? There is a difference in how low and high levels of cortisol can be treated. Perhaps you could post the results.

And how did your results compare to the optimal results? See this page :

rt3-adrenals.org/cortisol_t...

Example 1 tells you :

Optimal levels

• Morning at the top of the range

• Noon approximately 75% of the range

• Evening close to 50% of the range

• Nighttime at the bottom of the range

I could never tolerate as much thyroid hormone as I needed to make me feel even slightly normal until I managed to reduce my high levels of cortisol. Some people have the opposite problem, and need to boost their levels of cortisol before they can tolerate an adequate dose of thyroid meds.

stephensmith profile image
stephensmith in reply tohumanbean

High humanbean, results

Sample 1 - low 11.8 ( 12-22 )

Sample 2 - high 9.3 ( 5-9 )

Sample 3 - normal 6.0 ( 3 -7 )

Sample 4 - normal 2.5 ( 1- 3 )

Total daily cortisol 29.6 ( 21-41 )

DHEA Mean 0.25 ( 0.2-0.7 )

DHEA Cortisol ratio 0.84 ( 0.6-3.0 )

EbonyEvans profile image
EbonyEvans

Have you tried half of the recommended dose the Endo suggests and adding a week or two at that dose. It might be your body struggling to take that jump in dose. Also Mercury Pharma do a liquid form if it’s the fillers you don’t get with in tablet form. I’ve seen it administered in hospitals only. But had a good look and it’s available hopefully from your Endo if not maybe get a referral. I took a photo of it about three months ago, so inbox me if you get any excuse from Gp or Endo and I’ll email you photo. Definitely Mercury Pharma which is a U.K. brand I believe. Good luck.

stephensmith profile image
stephensmith in reply toEbonyEvans

I was on 75 every day for 6 months, felt I was on the limit. Increased just ONE day of the week to 100 and went hyper after 4 weeks.Think I will try vitamins route after tests in early Jan, liquid thyroxine if necessary. Thx

Silver_Fairy profile image
Silver_Fairy

Plums, peaches and apples too

Nanaedake profile image
Nanaedake

Birds can eat them, something protective in their guts

Silver_Fairy profile image
Silver_Fairy in reply toNanaedake

Not sure if all birds. I used to rescue parrots and was told to take out the seeds and stones from the fruit I gave them first. And the food goes through a lot of processes ie the crop, before it gets to the gut.

helvella profile image
helvellaAdministrator in reply toSilver_Fairy

Silver_Fairy,

This link agrees with you:

birdtricks.com/blog/the-dan...

Silver_Fairy profile image
Silver_Fairy in reply tohelvella

Slightly different, but you shouldn't feed parrots avocados, as every part is poisonous and fatal to them. Never have found out what it is in avocados that does this!

helvella profile image
helvellaAdministrator in reply toSilver_Fairy

Silver_Fairy,

Persin - it says - never heard of it before!

plannedparrothood.com/artic...

Suzi_ profile image
Suzi_

I am on Armour, take it empty stomach in the morning, before that I was on NDT did not suit me. Sometimes splitting dose am and 2 hours after dinner works. Blood work after 6 weeks of dose change. Good luck!

Eddie83 profile image
Eddie83

I was also unable to tolerate thyroxine for for about 11 years. The primary symptom was disabling anxiety, I would feel like I wanted to jump out of my skin. I had had gluten enteropathy that set off Hashi's. In addition to getting off gluten, I needed long-term therapy with nutritional supplements before the bad symptoms subsided. I am now on T3+T4=12+100 mcg, feeling great.

stephensmith profile image
stephensmith in reply toEddie83

Wow that seems quite frightening, that feeling of wanting to jump out of your skin. How did you find the right therapy?

Eddie83 profile image
Eddie83 in reply tostephensmith

I just posted what my numbers look like, now that I am on optimal treatment. For about 11 years, I was on T3-only for over a year, and then stayed on sub-optimal treatment (FT4 below range, FT3 low in range) for an extended period. During those ~10 years, I experimented with lots of different supplements. I finally hit on the right combo of supplements (esp. free amino acids, because the damage to my gut from gluten was preventing me from efficient digestion of protein foods; having enough aminos helped my adrenals function correctly, supporting sleep). I was able to increase my T3+T4 dose from 10+75 to 12+112 over a period of 5 months; I'm now feeling very well, with numbers to match.

Eddie83 profile image
Eddie83 in reply toEddie83

P.S. I am on nutritional supplements, plus 3 hormones: T3, T4, DHEA. No longer on any BigPharma drugs, which never made me feel well.

JennaShi profile image
JennaShi

Ho do you think maybe you are auto immune? If so have you been tested?

I think that it's the lack of habitat and pesticides.

We have plenty of birds here in France but I do live in the middle of nowhere and we feed them everyday.

I get fed up with the thousands we have some years and freeze some with the stones in, but not to cook them with the stones in I eat them raw.

stephensmith profile image
stephensmith

No not been tested. My gut function is fine. My wife is a Coeliac and whilst symptoms can be different ( even ) silent I do not believe I am auto immune. My thyroid issues were brought on by stress at work but I have been retired for 4 years

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