Thyroid or PA symptoms.

[Abby2003]

I apologise in advance if this post is confused or disjointed.

I had 75% of my thyroid removed in January 1978 and was diagnosed as having an under active thyroid in summer 1985. I have since been told I have hashimotoes.

Following some wonderful advice from one of the knowledgeable members on this site, I was diagnosed with PA 4 months ago and have been self injecting since then, twice weekly, under the supervision of a PA specialist. On the whole my health has improved immeasurably, And, as they advised I may do, I am experiencing reversing out issues and I feel I cope with these fairly well.

However, I have recently experience a problem that I had suffered with some 15 years ago and which I had assumed was related to my under active thyroid and level of medication. The symptoms seem to mimic anxiety and panic attacks. They happen through the night and are worrying and exhausting.

When I suffered with them 15 years ago I explained them to both my GP and endo, but neither of them offered any explanation. I even wrote a letter to the endo asking him for his take on them, but he failed to answer me. They went away on their own while adjusting my level of medication.

Now they are happening again and I don't know if they are thyroid or PA related. Were they thyroid related 15 years ago? I now realize that a number of the issues that I have been struggling with over how ever many years were probably PA related as they have resolved since SI.

My most recent bloods taken less than a month ago, before 8.00am and 24 hours after my last T4 and 12 hours after my last T3, are as follows.

Vitamin D 149 (50-200), CRP 8.9 (150 (37.5-150), TSH .08 (0.27-4.20), Free T4 18.7 (12.0-22.00), Free T3 4.7 (3.1-6.8), Total T4 111.0 (66-181), ABS 32 (<115), ABS 182.0 (<34), Cortisol 557.0 (73.8-507), Ferritin 145 (13-150), Serum Folate 30.70 (8.83-60.8).

How do I know if these issues are thyroid or PA related?

Would CBD help with them? I have asked the PA specialist if I can take CBD alongside the B12 injections and he said 'yes' but would offer no advice with regards how they may interact with T3 or T4.

Thank you in advance with any comments or suggestions members can offer.

[greygoose]

FT3: 4.7 pmol/l (Range 3.1 - 6.8) 43.24%

I would be inclined to think that your problems are more than likely due to that low FT3. Have you had your cholesterol tested?

Your cortisol is a little high. Is it usually like that? Your ferritin looks high but then so is your inflammation, so that's a false high ferritin and could, in reality, be quite low.

If you're injecting B12 twice a week, I think it's highly unlikely that your symptoms are due to low B12. I would think you B12 is actually quite high. So, more likely to be the low T3 causing them.

Would CBD oil help? Only way to know is to try it and see. As long as you take it at least two hours away from your thyroid hormone, there should be no interaction. I used to take my T3 (mono-therapy) in the morning and CBD oil at night and it was fine.

However, CBD oil cannot replace the missing T3, so you really do need to increase your dose.

[Abby2003 in reply to greygoose]

Thank you for coming back to me so quickly. The B12 specialist has prescribed ferritin so I’m currently supplementing with that. I don’t know about the cortisol levels, must be years since it has been checked, if at all. What steps should I take to bring it into range, or shall I retest in 3 months?

I am taking 7.5 mcg T3 split over 2 doses and I can increase that to 10 mcg per day. I was on 10 mcg per day for a few years but some months ago my levels went over range and I stated to feel very over medicated, so I reduced to 7.5 mcg with the agreement of the GP and endo.

I did try to put it back when I saw these latest results but I was again feeling over medicated and very jittery the whole time.

Not sure what the best course is but I’m going to get some CBD as a start I think. Thank you

[greygoose in reply to Abby2003]

Did he tell you to take vit C with your iron to help absorption and avoid constipation?

Ummm... I asked about cholesterol levels, not cortisol. You have a cortisol level which is a little over-range. I take it that was an early morning blood test? Might be worth doing a 24 hour saliva cortisol test to see what it's doing the rest of the day.

Are you aware that you have Hashi's? That was probable why you went over-range on only 10 mcg T3, and nothing to do with your dose.

Be careful of symptoms, they don't always mean what you think they mean. Symptoms of both over and under-medication can be the same. And the reason you felt over-medicated when you went back on 10 mcg could either be due to the high cortisol, or low ferritin.

[Abby2003 in reply to greygoose]

I wasn’t told to take vitamin C specifically but have done so during the winter months as a matter of course for some years just to help my immune system. I was aware that I had hashimotos, I had intended to include that in my post but sorry if I missed it out. The GP had tested my cholesterol levels in the past and they have never been as issue but probably not been checked for a year now. I had been thinking of doing the saliva test and as you have mentioned it will deal with it after the Christmas break.

I am also on ‘soft iron’ twice a week as prescribed by AK.

I have never been sure how to interpret my symptoms even though I have had thyroid issues one way and another for nearly 50 years 🤷‍♀️

Thank you for your input.

[greygoose in reply to Abby2003]

If I were you I'd take vit C with your iron in the summer, too.

[SlowDragon Administrator]

I am taking 7.5 mcg T3 split over 2 doses and I can increase that to 10 mcg per day. I was on 10 mcg per day for a few years but some months ago my levels went over range and I stated to feel very over medicated, so I reduced to 7.5 mcg with the agreement of the GP and endo.

My most recent bloods taken less than a month ago, before 8.00am and 24 hours after my last T4 and 12 hours after my last T3, are as follows.

So your results suggest you need to increase T3

Are you taking a daily vitamin B complex daily as well as B12 injections

[Abby2003 in reply to SlowDragon]

Hi. Yes I take it as an effervescent drink that also includes vitamin C

[helvella in reply to Abby2003]

Possibly not a good idea:

Vitamin C (ascorbic acid) supplements. Taking vitamin B-12 with vitamin C might reduce the available amount of vitamin B-12 in your body. To avoid this interaction, take vitamin C two or more hours after taking a vitamin B-12 supplement.

mayoclinic.org/drugs-supple...

But if you are getting B12 injections, it might not be important.

[Abby2003 in reply to helvella]

Noted, didn’t realize that interaction. Thank you 😊

[Tina_Maria in reply to helvella]

Interesting, the Igennus B-complex (which contains B12) has 200mg Vitamin C in the tablets, as it is added as an antioxidant to preserve the B-vitamins.

I guess it will depend on the Vitamin C dose, as a small amount might not interfere as much as a large dose (e.g., 2g or more) would?

[helvella in reply to Tina_Maria]

Always difficult to know! But seems a reasonable suggestion.

[FallingInReverse]

The B12 specialist has prescribed ferritin so I’m currently supplementing with that.

Out of curiosity - what specifically were you prescribed here?

[Abby2003 in reply to FallingInReverse]

I’ve just checked the box and I apologize but I was prescribed 5mg folic acid once a week. Sorry to mislead you

[SlowDragon Administrator in reply to Abby2003]

Difference between Folic acid and folate

healthline.com/nutrition/fo...

Yes I take it as an effervescent drink that also includes vitamin C

Many thyroid patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week

Post discussing different B complex

healthunlocked.com/thyroidu...

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

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

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

[bookish]

Hi, whilst I wouldn't at all disagree with greygoose about this possibly being a low T3 issue, I would have to disagree that it is unlikely to be a B12 issue due to twice weekly injections. You are likely to have been cellularly deficient for some considerable time, and 4 months of twice weekly is nowhere near enough to have finished the reversing out. Although your serum level will no doubt be high, that is irrelevant once injecting. You will continue to experience improvement (albeit changes that may seem worse first) for a considerable time, as the healing process can be very slow. Be patient and make sure you have enough co-factors. If you don't notice much improvement with the folic acid you could try a methylfolate instead, but perhaps a liquid like Metabolics, so that you can start with a very low dose and build gradually if needed. Magnesium may also help, if you aren't already using it. I use the Better You magnesium spray on the skin at night. Cheers

[Abby2003 in reply to bookish]

Thank you so much for your advice. I put a lot of faith in the ‘thyroid’ advice that I receive on this site and knew my T3 was lowish, but I have been feeling that it was the level my body felt comfortable with, so really didn’t like to disturb it. I did try briefly upping T3 a few weeks ago but it just added to my panic symptoms. And, the reoccurrence of those symptoms seemed to coincide with reversing out, so I hoped that’s what it was. Would taking CBD oil calm those symptoms at all, do you think? Using it a bit like I do paracetamol if I get bad leg pain from the same process.

Can you please explain what cofactors you are referring to?

My last blood test showed my magnesium levels are over range and if I do take any for sleeping I end up with a bad migraine in the morning so have further resisted that route!

It’s all such a balancing act and in my 70th year I have to work harder to keep up 😂.

Thank you again and best wishes

[bookish in reply to Abby2003]

Hi, I am not at all familiar with CBD, so can't really comment on that sorry. I avoid paracetamol, personally, as it is hard on your glutathione stores and I have problems with low glutathione anyway. I am grain free and there are few corn-free painkillers, so I stick with original Alka Selzer as the only one that I can tolerate as well as providing the low dose aspirin that consultant suggested. As to co-factors, along with thyroid hormones it is worth keeping an eye on folate, ferritin/iron and potassium. Definitely a balancing act! Cheers

[Enuffisenuf in reply to bookish]

Agee with bookish, that it could be B12d. It isn't as simple as having lots of B12 in your blood. The recommended regime is eod injections until symptoms have gone, then reducing to whatever to keeps them at bay, so at twice weekly your progress will be a bit slower. My night time anxiety took nearly a year of eod B12 injections to improve. I've found after a year of eod, and sometimes ed injections, that symptoms can still return. I've just had flu followed by covid, and a few of my symptoms returned, despite injecting.

I expect that my blood test results would be off the scale but my symptoms tell me otherwise. It's a bit of dark art.

[Abby2003 in reply to Enuffisenuf]

Your reply has given me so much confidence in what I’m doing. Thank you. Andrew suggested twice a week and I had assumed it’s because of my age and perhaps no so bad as some 🤷‍♀️. Your thoughts on using CBD for the nighttime episodes?

Thank you 🙏🏻

[waveylines in reply to Abby2003]

I'm on high level of b12 injections and it has taken me 6years of slowly improving to get to where I am with a lot of symptoms gone or only mild. It sounds like it would be worth increasing ure b12 jabs. And use Thornes basic B to support it has methylofolate in it plus all the vit Bs as they all work together.

I definately would find out what your potassium level is. Should be on your full blood count. You need it to be in well into the range. Potassium helps to regulate heart rate and the heart needs it. Mine was low but in range so I've increased eating bananas, fresh oranges, broccoli, young kale, potato or sweet potatos, avocado. Doing this has calmed my heart down.

Also magnesium is good for the heart. I don't tolerate supplements so I eat 1-2 Brazil nuts per day. Magnesium is frequently deficient in our diets.

Doctors are not trained in vits and minerals but they are very important co factors.

Hope this helps.

[Enuffisenuf]

I'd suggest that you take a look at the PAS section of this site for more B12d advice and information. It can be a long road and it's easy to lose faith, especially when you have thyroid issues too.

It's hard to know if it's your thyroid or B12d causing the problems, so you need to address both. It took me about 10 months of B12 injections to get to a point where I could fight to reinstate my thyroid medication.

I think that CBD is akin to snake oil, I'm afraid. Sorry. There is so little active ingredient in it, I don't see how it can do anything. My opinion only, not based on any research.

If it's an undermedicated thyroid, B12d or a combination of the 2 with a few vitamin shortfalls thrown in for good measure, you need to fix the cause.

[healthkiwi in reply to Enuffisenuf]

Re Snake Oil: I have struggled to find CBD that works for me. I hate the taste of the oil, and different formats like capsules or gummies can be unpredictable or even unnoticeable. And they are expensive to experiment with. But what I have found is a couple of brands of canned drinks that have a reasonable dose in - anything from 15 - 30 mg. Whether it's because it's in a liquid format, I can tell within an hour or so that it's taking the edge off. They still work out expensive, though cheaper in packs of 4, so I only use them on very difficult days, but I wouldn't be without a few in the house for those times.

[Katherine1234]

I use to suffer with this night time phenonium when I was under treated for thyroid and not being treated for B12 deficiency. I am wondering if you are still stuck on fight/flight mode which can be especially worse at night. Not being treated right for thyroid and B12 for a number of years gets us stuck in that mode meaning you are not being able to unwind sufficiently before bed. I can only suggest what I did, I took Thiamine B1 an hour before bed to start to relax my nervous system, along with B5 the vitamin that prepare you for sleep (lots of people are short of B5) magnesium glycinate and zinc which helps you sleep and stay asleep. I noticed a huge difference.

Sounds stupid but I also made sure both my hands were not screwed into a fist whilst I was trying to sleep, that signals the brain to stay on alert, I kept them out flat and relaxed.

Another thing is to make sure you are not getting low sugar drops of a night, the brain panics and wakes you on red alert. Try eating a small amount of protein before bed.

I do all of this, my sleeping use to be horrendous. The trouble is we need our sleep to recharge our energy batteries for the next day, if we do recharge properly we wake up feeling like we have been out of the town drinking the night before, or that we are coming down with the flu feeling. It takes us ages to try and get going in the morning. Good sleep allows you to recharge energy batteries and get up ready to seize the day.

Hope this helps :0)

[Abby2003 in reply to Katherine1234]

Thank you. I will try the B1and 5 an hour before I go to bed. I’m already take zinc, but earlier in the day, so will delay that and take it at the same time. The ‘hand’ thing is really interesting and I will implement that as well.

I know I always feel much worse if I have had a bad night, but those times when I have slept really deeply always result in me having a migraine. Finding a balance is the key.

Thank you so much for sharing 🤗

[CallMeSunny]

Ref Radio 4 World at One towards end of 45 minute programme today (09 December) : a discussion about CBD, which I’m sure you’ll find interesting. Good luck to you going forward. Sue.