results advice for my daughter please

[Knackeredandcross]

evening all!

please may I ask for some feedback on my daughters most recent bloods?

she has previously had 3 above range tsh results but it had seemed to go back down. On one occasion even though her tsh was above range and her t4 low she had above range t3 which was very strange.

We’ve done a watch and wait but she’s so tired at the mo and has terrible brain fog i’m wondering whether to ask for a trial of levo for her.

is it usual for her tsh to go and down so much? She’s never been below 2.86 (0.27-4.3). That’s been her best reading to date and 4.77 has been the highest.

she has a constant battle to keep her b12 up and has injections regularly. Her folate is finally improving a little but even with supplements we are struggling on getting her iron and vitamin d to increase much,

another issue is her cholesterol has now shot up to 6 which they’ve said needs immediate action but we aware this is probably due to her thyroid.

what would you guys in the know suggest please?

thank you in advance 🙏

[greygoose]

Well, it really looks like her thyroid is failing. The TSH is too high; the FT4 is too low, and the FT3 is higher in its range than the FT4, which is a sign that the thyroid is failing.

FT4 16.3 (12-22) 43.00%

FT3 5.7 (3.1-6.8) 70.27%

Normally, the percentages are much closer together, with the FT3 slightly lower than the FT4.

It's important to look at the three results together, not cherry-pick them like doctors tend to do, using the most favourable result to dismiss the patient with. They are all three linked.

Has she ever had her antibodies tested?

[Knackeredandcross in reply to greygoose]

Thank you so much for your reply. She has been tested a few times over the past 18 months and they are always within range, both TPO and thyroglobulin. She’s just so tired and brain fogged that I think we’ve watched and waited long enough but I’m aware that’s just because I want her to be well and it may not necessarily be the best course of action for her just yet.

[greygoose in reply to Knackeredandcross]

I don't think it would hurt. And would probably be benificial. But don't let the doctor get away with saying, well, she's only a little bit hypo, so she only needs a little levo. She needs a normal starter dose at her age, 50 mcg. Hypo is hypo and you can be a little bit hypo any more than you can be a little bit pregnant. Either you are or you aren't and she is. Hypo, I mean.

How old is she?

[Knackeredandcross in reply to greygoose]

Thank you. My doctor tried that one on me. I think she thought it was a supplement rather than a replacement! She’s only 20 but has been struggling on and off for a while as she had an h-pylori stomach infection for 4 years that all the doctors missed and we were never sure whether her symptoms were thyroid or stomach. The infection has been resolved now and all she’s left with is the fatigue and brain fog so I’m thinking they are definitely thyroid.

[greygoose in reply to Knackeredandcross]

I agree with you. Being hypo reduces stomach acid, which allows the h-pylori bacteria to take hold - normal level stomach acid would kill it. I expect her doctors gave her PPIs, didn't they? Acid reducing drugs. Which would mean her stomach acid got even lower, meaning that digestion was compromised leading to nutritional deficiencies, which wouldn't have helped her thyroid. They really don't understand how all these things are linked.

Forgot to mention that high cholesterol is a hypo symptom.

[Knackeredandcross in reply to greygoose]

Thank you. Yes they gave her PPI’s which I would normally have told her not to have but her stomach lining was covered in ulcers due to the long-standing infection and as it did seem to give her some measure of pain relief whilst they healed, we decided to go for it. We didn’t know at that time that her thyroid had gone a bit crazy again but that was maybe the reason why it did. She stopped the PPI’s a few weeks ago now so would her thyroid still be affected by then. Do you think ger thyroid could return to a more normal state if we left it longer or would you ask for the trial please? I don’t want to set her health back in any way.

[greygoose in reply to Knackeredandcross]

I very much doubt if her thyroid could return to normal. Pretty certain it was low thyroid that caused all the trouble in the first place. But wait and see what others on here think tomorrow.

[Knackeredandcross in reply to greygoose]

Thank you for all your advice, it’s appreciate 🙏

[greygoose in reply to Knackeredandcross]

You're very welcome.

[MEguy in reply to Knackeredandcross]

proton pump inhibitors can impede B12 absorption I believe. Has she had her B12 levels checked?

[greygoose in reply to MEguy]

Not just B12. All nutrients!

[Knackeredandcross in reply to MEguy]

She only had them for around 4 weeks and her b22 has been low for over a year but I’m guessing. The ulcers and the infection could have impeded absorption too?

She has always had very low b12 so we get her injections every other month and daily sub lingual drops. All her vitamin levels were very low around a year ago and so we’ve been supplementing. Her folate is finally increasing but her iron never seems to improve.

[greygoose in reply to Knackeredandcross]

Is she taking a B complex with her B12? Because the Bs all work together and need to be kept balanced.

[Knackeredandcross in reply to greygoose]

No, she was just taking b12. We have struggled finding a good complex in liquid form. I will get onto it tomorrow. Thank you

[MEguy in reply to Knackeredandcross]

I just had an advanced thyroid blood test done with Medichecks. It includes full thyroid as you posted above (FT3,FT4 and TSH) as well as folate, active B12, Ferritin and CRP (c reactive protein). Cost me £145 including a nurse to come and take my blood at my house. Perhaps you could get one of these done.

[Knackeredandcross in reply to MEguy]

We’ve just had it done. I always get the full vitamin tests when she does her thyroid 👌 we usually use medichecjs too but we used monitor my health this time as it was better value but they don’t seem to post the vitamin ranges for some reason. I’ve emailed them to request this

[waveylines in reply to Knackeredandcross]

B12 injections every other month could well be inadequate. Did she ever have them more frequently? Also B complex with folate very important to balance the b' s. I'm sorry I don't know a liquid version of this. I use Thorne's Basic B. I don't know if the contents of the capsule could be emptied out & dissolved in some water.....

I agree with Greygoose her thyroid isn't going to recover so starting Levothyroxine would be very sensible.

GPs often miss other consequences signs of hypothyroidism. They rely totally on blood tests. Raised or high cholesterol is a definitive sign of an underactive thyroid. Infact pre thyroid blood tests cholesterol level was used as a diagnostic tool for hypothyroidism, alongside signs and symptoms.

The fluctuations in blood test results are all typical of a failing thyroid. As the thyroid will desperately try to increase output but it can't sustain it.

[Knackeredandcross in reply to waveylines]

Thank you very much. We found her b12 level stayed high if she also took the daily drops as well as the injections (we test her every 6 weeks). I think part of the problem is that she gets complacent when she starts to feel better. Now that she’s stopped feeling so sick as her ulcers have healed she isn’t so driven to remember to take her supplements! I need to review what her regimen and make her understand. Thank you very much 🙏

[waveylines in reply to Knackeredandcross]

In all honesty once on b12 injections there is no need to test B12 levels. It should be treated there on in by signs and symptoms. I know there's some overlap with Hypothyroidism but B12d.org has a symptom checker that is very diverse and is useful if you are unsure whether it's Hypo or B12. 😊

[Knackeredandcross in reply to waveylines]

I will have a look, thank you 🙏

[Litatamon in reply to waveylines]

Does this include all cholesterol readings waveylines, that are impacted by being hypothyroid? Ie. Total, LDL, HDL, triglycerides.

[waveylines in reply to Litatamon]

I don't know if back then they had the ability to subdivide cholesterol like that so can't say but definately the overall figure.

[Litatamon in reply to waveylines]

Thank you. Forgot it was back then.😊

[ClareP5 in reply to Knackeredandcross]

She could still be low in B12, some of us take what GPs think are crazy amounts of B12 to feel well. The good news is that you can’t overdose on B12, but you need it for your body to get the best out of the thyroid meds. I would go big on B12 and get Levo trial. Good luck and I hope she feels better soon.

[Knackeredandcross in reply to ClareP5]

Thank you 🙏

[SlowDragon Administrator]

Has it been checked that H Pylori definitely gone

thyroidpharmacist.com/artic...

[Knackeredandcross in reply to SlowDragon]

Yes. She had an endoscopy a couple of weeks ago and they said all looks good. The first lot of treatment didn’t get rid of it but the second did the trick. She’s eating again now and has stopped being sick all the time.

[SlowDragon Administrator in reply to Knackeredandcross]

So make sushi maintains all four vitamins at GOOD Levels

Vitamin B complex

Igennus are small tablets. Full dose is 2 tablets per day, most people find just one per day is enough. But a few people find it’s not high enough dose

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

Vitamin D at least over 80nmol

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Is she taking magnesium in afternoon or bedtime?

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Retest again in another 2-3 months …if thyroid levels still low look at starting on levothyroxine

[Knackeredandcross in reply to SlowDragon]

Thank you so much. She already has the better you spray but I suspect part of the issue is her remembering to take it! We had been trying to use sprays and drops as taking anything in her stomach made her feel sick but now it’s healing I will try the tablets. Her magnesium was basically anytime she felt she could stomach it, again this will hopefully improve now that the nausea has reduced. I will get on the hunt this morning!

[helvella]

When it comes to iron, that is so very important. You cannot expect everything else to recover and restore health if iron is still low. Low thyroid hormone, as has already been said, impairs absorption in stomach, etc., so not surprising if she is low.

My blog entry has some information about options for supplementing. Quite a number here find a haem (heme) form of supplement works well. Though if she is really low, an infusion might be in order.

helvella - Iron Document

This is a summary of what I have read up and found out about iron supplements over the past few years. I am not in any way medically trained. You are strongly encouraged to check every detail before making any decisions for yourself.

helvella.blogspot.com/p/hel...

[Knackeredandcross in reply to helvella]

Thank you, I will have a read through. She’s always had low iron but not low enough as it’s always in range so the gp is obviously saying the usual. I had her on gently iron because of her stomach pain so maybe we need to switch this now. Thanks again 🙏

[helvella in reply to Knackeredandcross]

There is a tendency to rant on about "optimum levels" - because the lab reference intervals are very much not optimum.

And in this case, I suggest that ignoring "low" because it is not low enough is a terrible approach.

As is the other problem, the way they prescribe iron when low, see levels rise, then stop. A few months later, go round the same loop again. And again.

Adequate (but not excessive, of course) iron intake needs to be continuous. Maybe dropping dose, or switching product, when levels rise. A low dose of something every day might be much better tolerated, and just enough to keep levels good.

Roller coasters might be exciting but they are not good for our health.

[Katherine123]

I am B12 deficient and hypothyroid so I might be able to help. I would suggest if she is on regular injections she needs 4700 to 5700 mgs of potassium a day. B12 injections use up potassium very fast and can compromise our adrenals. B12 injections burn through potassium, folate and magnesium (all the energy nutrients).

I did not realise this. I was falling asleep everywhere and no energy whatsoever. I have since found out that potassium is like a final part of the Krebs cycle so we can make enough energy ATP. Her energy is already compromised due to low thyroid results. Also the injections burned through magnesium too, big time, that is another energy mineral. A good multi B vit once a day is needed to companion the injections and high dose folate. Not the chemical folic acid but the real natural folate. Some people cannot absorb Folic Acid. Some people are ok on it. But as she is having trouble to raise it. I would go with the natural. Also it would be wise to take a daily magnesium supplement.

Taking PPI's would have corrupted the picture further. She would not have been able to absorb her nutrients, minerals and amino acids. Although I understand that she had such an ulcerated tummy. I used natural supplements to heal my tummy and refused PPI's.

I would google how to make an adrenal cocktail (for potassium) and start with one a day, going up to 2 a day. This really was a game changer for me.

Her cholesterol will go down once she is being treated for her thyroid (this happened to me). Do not let the doctor give her statins.

I have had episodes of awful brain fog which goes once I am treated right on thyroid medication and get enough potassium and magnesium. Hope this helps

[andyjs2 in reply to Katherine123]

Would it be beneficial to check cortisol levels as well at this point?

[Katherine123 in reply to andyjs2]

I had to have mine checked. 3 early morning cortisol tests. Mine is low but not low enough for Addison.

[andyjs2 in reply to Katherine123]

I think you can still feel tired/unwell with low cortisol but not Addisons. My son didn’t start feeling better until he started taking adrenal cortex to raise his cortisol levels from 25% up the range to about 80%. Just a thought.

[Katherine123 in reply to andyjs2]

A good thought andyjs. I do have Thornes adrenal cortex but have only ever taken in sporadically. I will start daily on it. The funny thing when was was really sick the start of this year with reactivated Epstein Barr virus and Strep B. My early morning cortisol went up to the 600's and I was able to walk without stopping and starting and I was able to stand in kitchen for longer than 10 minutes. Also my low blood pressure improved a bit. After I got better my cortisol went down to 340.

[andyjs2 in reply to Katherine123]

Curious what the range was for your cortisol reading? We also found that if he just took a little adrenal cortex (like 100mg per day, it didn’t help as much as taking more and splitting it up 3-4 times per day). He is taking 200mg at waking, 10am and 1pm, and 150mg at 5pm and has never felt better. Again though he is a 32yo male and everyone is different so not sure what would work best for you so it may take some trial and error before you feel any improvement.

[Katherine123 in reply to andyjs2]

It was 340 the last early morning blood test. I had done a 4 point saliva test January of this year, which measures bound cortisol. NHS blood test measure all cortisol and a lot of it is inert unbound. My saliva test was mornings flatlined under the line, afternoons the same, eveing and night time just scraped in over the line at the very bottom, Funny thing is I always feel more energy from 5pm onwards. Mornings I am like a dead person walking.

Just looked at the Thorns adrenal cortex it is only 60mgs per capsule

[andyjs2 in reply to Katherine123]

Actually, I read that saliva cortisol tests measure your FREE cortisol and blood tests measure both free and bound, so the saliva test is the gold standard, at least that is what I’ve always thought?

Based on your results, it sure sounds like cortisol is a problem for you! Adrenal cortex is actually fast acting so you should know if you’re taking enough after each dose. It also has a very short half life, and seems to last 3-4hrs, hence the need to multi dose during the day.

Unfortunately it can get expensive to have to take multiple capsules per dose, but, for now, you’re just trying to figure out if it helps at all and what dose does the trick. If you don’t feel anything with one capsule (60mg) try two per dose, and go from there. If don’t feel anything after 180-240mg per dose, you might want to consider straight cortisol. Again, pay close attention to how you feel after each dose and adjust accordingly.

[Katherine123 in reply to andyjs2]

Andyjs2 I am going to try this regime, you have been so helpful to me dearest. Yes I agree re: saliva measures free cortisol and gold standard, blood test measure free and bound. I probably worded it a bit wrong in my message.

[andyjs2 in reply to Katherine123]

My son would take his BP and temp 45 min after a particular dose to see what it’s doing to him. If BP went into high 120’s and temp went high, he would cut down on dose.

[Katherine123 in reply to andyjs2]

It actually might help my blood pressure andyjs as mine is dangerously low 52/81. I am sure that is part of my energy equation as well. The T3 has bought the bottom digits up a tiny bit.

[Knackeredandcross in reply to Katherine123]

Thank you so much for all this. She has all these supplements already but has been terrible at actually taking them consistently. We need to relook at her regimen and get her back on track! Its really useful information ❤️