I will try and keep this as succinct as possible and wont reference all the dozens of tests/results/rabbit holes i have been down over the past 4 years.
Around 4 years ago i paid to see an Endo as i had been suffering from fatigue, brain fog etc. He diagnosed "Borderline secondary hypothroidism", low testosterone and low VitD. I started taking thyroxine but didnt notice any real difference even when i went up to 150mcg. The other two issues were easily solved.
After a couple of years of taking 150mcg i started to get heart palpitations, missed heart beat etc. My GP was adamant i was taking too much thyroxine the endo violently disagreed. I had various heart scan and as was found to be ok. In the end i dropped my dose to 100mcg et voila all the heart issues vanished. I have now been on that dose for 2 years.
Unfortunately, at no time during the 4 years of taking thryroxine have my initial symptoms fatigue, brain fog ever improved. I decided to try CDB under the guidance of a very close friend who has highly knowledgable of the subject having reversed her pancreatic & liver cancer to the amazement of her doctors who have fully supported her CDB efforts (this is a long and involved story so i have massively simplified things!)
I started taking the CDB 10 days ago. When i started my friend said that one of the common effects of CBD is that it increases the efficacy of any meds you may be taking. Sure enough, after 5 days the heart palpitations returned. I decided to drop my thyroxine to 50mcg to see if this eliminated the heart palpitations, that was 5 days ago and i am still getting them.
All this begs a number of questions that i am hoping some of the highly knowledgable folk in here might be able to answer
1. Should i ever have been on thyroxine, particularly as it has never had any effect?
2. If i didnt need thyroxine then surely whilst was taking 150mcg there would have been some obvious impact?
3. I am tempted to stop taking thyroxine all together and seeing what the CBD does on its own - is there any danger in stopping taking it after 4 years? Do i need to reduce slowly?
4. What is the half life of thyroxine? I dropped from 100 to 50mcg but that was only 5 days ago is that too soon for the change to have taken effect?
5. Does anyone have any experience of CBD and fatigue/anxiety?
I understand the above info may be too general for people to form an opinion but any feedback would be gratefully received.
Thanks
Mark
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the Half life of levothyroxine is 7 days but to reach a steady state it take about 4 weeks, hence recommended blood tests 6 weeks after a dose change. I would think it unlikely that you will be able to come off levothyroxine completely but confess I don’t know anything about cbd. Have you ever had thyroid antibodies tested? Most hypothyroidism in Europe is caused by hashimoto’s disease an autoimmune disease where by antibodies attack and destroy the thyroid. I would suggest that you stick at the reduced dose of levothyroxine for at least 4 weeks then get a full set of bloods to compare to previous tests and assess how you feel.
1. Impossible to say without seeing your labs and ranges at the time of diagnosis.
2. Depends whether you were converting all that T4 (levo) to T3. But without full testing, we can't really tell for sure. Sounds to me as if you weren't.
3. If your thyroid is sick or damaged, it's doubtful that CBD oil will help it. It doesn't matter how long you've been taking levo, if you need it, it's dangerous to stop it. You cannot live without thyroid hormone. But, say you stopped it for whatever reason tomorrow, you thyroid would just take up where it left off, doesn't matter how long you've been taking it. You can't become addicted to it.
I wouldn't recommend you stop it at all, but certainly going cold turkey is contra-indicated. Reductions should be made in 25 mcg steps every six weeks. You reduced by too much when you went from 150 to 100 and 100 to 50. Too much of a shock on your system.
4. The half-life of T4 is approx 7 days. So, after 5 days, you can't expect to feel very much - you might even feel a hell of a lot better! That happens frequently, and nobody knows why. But, that does not mean that you didn't need it in the first place. Symptoms of low thyroid will eventually come creeping back in.
6. I take CBD oil. I haven't noticed it's done anything for my fatigue, but it does give me better sleep. It's also helped with back pain and my ataxia. My anxiety was improved by taking enough T3.
I wouldn't doubt that CBD oil helped - even cured - your friends cancer. I've heard lots of stories like that and have no reason to doubt them. But, you cannot compare an underactive thyroid/pituitary with a cancer. Levo is not intended to cure your hypothyroidism. There is no cure. Levo is a thyroid hormone replacement, replacing the hormone your thyroid can no-longer make enough of, for whatever reason. You cannot use CBD oil to replace a hormone. The only replacement for a hormone is a hormone.
Hi, thanks for all the info, i didnt want to make my post too long but i can answer most of the questions.
1. At time of diagnosis
TSH (0.3-5.00) 2.0
T4 (8.8-18.8) 11.8
T3 (3.1-6.8) 4.0
I also had extensive pituitary scans and tests and that was fine, ditto adrenals.
2. Whilst on 150mcg
TSH (0.3-5.0) 0.09
T4 (8.8-18.8) 23.9
T3 (3.1-6.8) 5.0
It was suggested at this time by Endo to try T3 as well (ecase wasnt convertng) which i did but it made me feel very edgy/racy so we discontinued.
3. Its interesting but when i dropped from 150 to 100 the heart problems stopped within a couple of days.
4. Ok thats worth keepng an eye on.
I think what i am trying to understand is that for the 4 years i have been on various levels of thyroxine, none of my symptoms have changed so was the original diagnosis erroneous? Wold 150mcg not have made some dfference? I am far from an expert but given the cannabinoid system is so huge and powerful i am wondering if it could "cajole" a basically healthy (but sluggish) thyroid into working better. Maybe the problem in my case was that the thyrod was essentally ok and that the CD has gven t a kck start.
1. I have to say I'm surprised you got a diagnosis of anything with those labs. The TSH is a tad high for someone without any thyroid problem, but given the levels of your Frees - which weren't that low - I would have expected the TSH to be lower. What time of day did you have the test? I don't think there's any proof of secondary hypo in those results.
2. So, you weren't converting all that levo, which was a pretty high dose. But, the higher your FT4, the less you convert to T3, and the more you convert to rT3. Lowering your dose could have improved your conversion, because it looked ok in the original test.
3. Could have been coincidence about the heart. As the improvement didn't continue, it doesn't prove anything.
If none of your symptoms improved the time you were on levo, then it's possible that it wasn't your thyroid that was causing them. You said you had low vit D, were your other nutrients tested? Like vit B12, folate and ferritin? They also could have been low and causing hypo-like symptoms - especially vit B12. Personally - and I'm in no way a doctor or anything like that - I do think your original diagnosis could have been wrong. But, were antibodies tested?
If you do have secondary hypo, then your thyroid is healthy. It would be a problem with your pituitary. Your thyroid does not need cajoling into into working better because there's nothing wrong with it. BUT, whatever the problem, you cannot 'kick-start' a thyroid! I cringe every time I hear that expression. lol
Thanks greygoose this is fascinating info, many thanks for your time in trying to help me understand things.
1. The tests were done around midday
2. I have another panel from around 1 year after taking 150mcg of thyroxine
TSH (0.3-5.0) 0.6
T4 (8.8-18.8) 18
T3 (3.1-6.8) 3.3
rT3 (10-24) 18.0
3. At time of diagnosis
B12 (179-1162) 437
Folate (2.8-12.4) 7.7
Ferritin (15-300) 164
Pituitary was scanned and checked and was given the all cleAR
So my overview is that
Vit D was low (since corrected)
Pituitary was ok
Ferritin & Folate were ok
B12 a bit low
Thyroid stats ok-ish
There has been no improvement over 4 years from taking thyroxine (nor Vit D or Testosterone for that matter) in terms of fatigue, anxiety, brain fog - so that latest diagnosis i had was CFS, hence my interest in trying CBD.
1. TSH is highest early in the morning. So, it would have been on its way to its lowest level at midday. But, there's no guessing by how much is would have been higher at 8 am. Possibly not enough to make a big difference.
2. You can see clearly, there, how getting your FT4 up to the top of the range has affected your conversion.
3. B12 deficiency is more about symptoms than blood test results - although they remain a good guide. Given your hypo-like symptoms, it could very well be that your level is too low for you. It should be at least over 550, anyway. Have you tried supplementing with B12? If not, it might be a good idea to get that tested again, see if it's changed.
CFS is just a 'diagnosis' that they give when they can't think of anything else. I hope you didn't accept it! If you have accepted it, it will probably have consigned you to the dustbin!
By all means try CBD oil, see if it helps. It can't do any harm, and could do a lot of good. It does for a lot of people. Are you on Facebook? There's a good CBD forum on there.
#3 - “It’s interesting but when I dropped from 150 to 100, the heart palpitations stopped within a couple of days.”.
Your FT4 was a whopping 23.9 (8.8-18.8)!! That’s crazy high!
Sorry, but no, this is no surprise. What is surprising is how over medicated you were on T4, and that you were kept on the dosage for years!
With FT4 that high, its not interesting your heart palpitations stopped when you reduced your meds. It’s to be expected! You had heart palpitations because your FT4 was MUCH TOO HIGH. 23.9 is way over the top of range and is dangerously high. Your results after one year on 150 mcg are still too high and are at the very top of range: 18. You were not converting because your FT3 is much too low.
You need to supplement T3, since you’re not converting. No wonder you have fatigue. Increasing your T3 will help your fatigue, etc.
If my FT4 was that high, I’d probably have a heart attack. If mine is ever over 75 of range, I get heart palpitations and other symptoms. I get no symptoms at all if I keep both my FT4 and FT3 at around 65-70% range.
I hope you get your med dosage sorted out before you crash. You were not converting properly on 150 mcg. Now you’ve reduced your T4 down to 50 mcg? Your FT3 is soon to be on existent and your will soon feel even much worse.
Hi thanks very much for sharing your knowledge. Im going to do a quick recap
Before i was on any meds
TSH (0.3-5.00) 2.0
T4 (8.8-18.8) 11.8
T3 (3.1-6.8) 4.0
Whilst i was on 150mcg
TSH (0.3-5.0) 0.09
T4 (8.8-18.8) 23.9
T3 (3.1-6.8) 5.0
After i dropped to 100mcg (around 5 months ago)
TSH (0.3-5.0) 1.0
T4 (8.8-18.8) 15.2
T3 (3.1-6.8) 4.5
It seems to me that my results on 100mcg are broadly inline with your suggestions? A bit low on T3 perhaps. The palpitations only started once i had been on the CBD for a week so i am now utterly confused!
I do have some T3 which i took at some stage (cant remember when) but it made me feel quite jittery even a very low dose.
Comparing my current stats to those before i was taking anything i'm not even convinced that T4/T3 is a problem in my case. Do you think if i could get my T3 up to around 5.0 then that would have a noticeable impact?
Yes, they absolutely were a problem. You appear to have central or secondary hypothyroidism, which comes from a malfunction of either your pituitary gland or hypothalamus. You also might have Hashimoto's. You say that your antibodies were tested. Which antibodies and what were the results? There are TWO antibodies that must be tested, not just one. They are called TPOab and TGab. Far too often doctors test just TPOab and tell patients that they don't have Hashimoto's. Turns out in fact they have Hashimoto's but the doctor didn't do thorough testing and omitted the other thyroid antibody, TGab. The other thing is that these antibodies can become positive over time. If they were negative years ago but you're still struggling with unresolvable symptoms, then antibodies must be retested.
Before you started meds, your central/secondary hypothyroidism was indicated by both your FT3 and FT4 being much too low:
Before i was on any meds
TSH (0.3-5.00) 2.0
T4 (8.8-18.8) 11.8 = you were 30% of range. Need to be at least 50%, or 13.8.
T3 (3.1-6.8) 4.0 = you were 24% of range. Need to be at least 50%, or 4.95.
The area of the range where most people tend to have the least amount of symptoms is somewhere between 50% and 75% of range. At or below 50%, and there are often symptoms. Above 75%, and there are often symptoms (like heart palpitations, but these can also occur when too low in range). Each person has their own individual sweet spot where they feel best. Between 50% and 75% is just a guideline. What people don't realize is that if one or both hormones are over 75%, that can contribute to symptoms.
Thanks you, i'm very grateful that you have taken so much time to help me. These were the antibodies tested 6 months ago, there is no mention of TPOab
Thyroglobulin (0-40) <10
Peroxidase (0-35) <9
Regarding the ideal zone for T3 & T4 is it possible to fine tune the dosage to those exact levels? I suppose it must be if you have managed to do so. I'll get to work on the other things you requested.
You're very welcome. They tested both antibodies. TGab is thyroglobulin antibody. TPOab is thyroid peroxidase antibody.
Yes. The goal is always to fine tune your medication so that you have the least amount of symptoms. This definitely takes fine tuning. It's not difficult to do and can be done within 3 to 6 months if you stay on top of things. This is how you achieve your optimal levels:
1) Stay on top of how you're feeling and current symptoms. Don't ignore symptoms.
2) Follow standard testing protocol, which is testing every 6 weeks.
3) Follow standard medication adjustment, protocol, which is following your 6 week testing, adjusting medication every 6 weeks until you have the least amount of symptoms.
4) Test D3, B12, folate, red blood cell magnesium (NOT serum, it's the wrong test), and ideally a complete iron panel (ferritin will suffice if your doctor will not run a complete iron panel), and make sure you get your vitamin levels up into their most ideal ranges. Retest after 3-6 months of supplementation.
4) If you have a doctor who ignores your symptoms, ignores testing the right tests, who thinks if "you're in the range" means that you are fine (it doesn't), who ignores your FT3 tests or FT3 levels, who thinks that T3 doesn't matter, or who doesn't test both thyroid antibodies, then it's time to find a new doctor.
5) If a new doctor doesn't treat you properly, keep looking until you find a good doctor. Do not ever settle for the wrong treatment.
Hi Shooting Stars, im going to follow your suggestions and try and get my bloods in the right "sweet spot" over the next 3 months. I've stopped the CBD for now and wont reintroduce until i feel that the T3 & T4 are at least closer to your parameters.
I've gone back to 100mcg of Thyroxine which has given me an approx average level of 16 over the past 6 months and ive ordered new blood tests. In terms of introducing T3 what is the suggested protocol? I was thinking of starting with 2.5mcg once a day for a week then moving to twice a day for a further week before getting bloods checked again. If i were to do it that way should i stick to the 100mcg of T4 as well?
I hope you dont mind such direct questions and i understand that you are not a doctor and not giving medical advice but to be honest i trust the people in here more than the medical profession PLUS it is much quicker to use this resource than consult with a doctor even privately.
I do have about 10 sets of blood results covering the past 4 years which i could post if that helps, i was conscious that it would make for a very long post if i did so though!
Don't you have more labs than just these labs, I hope? You should have been tested multiple times on each dosage. Can you post those results?
On 100 mcg, your FT4 is 64% of range (could be a bit higher), and your FT3 is 38% of range (needs to be a lot higher). Your FT3 should be between 50% and 75%, or 4.95 and 5.875. At 38% of range, it's no wonder you don't feel well. Personally, I keep both my FT3 and FT4 around 70% and I have minimal or no symptoms, but that's just me. If I get higher than 75% on either, it's too high and I have symptoms.
Also, considering your labs, I would get a second opinion on your pituitary results, plus the cause could be your hypothalamus. It's possible the doctor missed something. Depending upon the type of scan, if they scanned your pituitary gland, your hypothalamus might be on those same images.
Regardless of whether the cause is your pituitary gland or your hypothalamus, you still have a malfunction between your body's communication with your thyroid, which is causing fairly adequate TSH, but too low thyroid hormones. The treatment is still the same: supplement thyroid hormones.
What tests did your Endo carry out to evidence his diagnosis of secondary hypothyroidism; and as your diagnosis was of "borderline" hypothyroidism did he never query that your Levo had nevertheless increased to 150mcg without amelioration of symptoms? You've mentioned heart investigations but not blood test results in all that time - on what basis was the decision made by your Endo/Dr to increase your dose to 150 mcg, and then how did you validate your decision to decrease to 100 mcg & on to 50 mcg - considerable reductions each time, in a short time? CBD oil "may" (or may not, I don't know) bring about a need for a current thyroid dose to be reduced; but it won't be a given in every case. The same is said about LDN, but in fact many report no such need, or even that they have to increase their thyroid dose once taking LDN. I'd suggest that before making any more changes, you have a comprehensive set of thyroid tests carried out (privately if you are able as your GP may not provide all) that includes not only TSH and FreeT4, but FreeT3 as an absolute minimum: and preferably also thyroid antibodies plus Vit D, B12, Folate & Ferritin - you can see test options at Medichecks & Blue Horizon laboratories thyroiduk.org.uk/tuk/testin...
It depends upon the concentration. Yours must be very weak if you can take one full drop 3x a day.
The kind that I have is very strong. The starting dose is 1/4 dropper per day. It’s so strong that that’s all I’ve ever taken each time that I’ve taken it, with exception of three times I’ve taken 1/2 dropper. I do not take it every day, just as needed if my arthritis is causing pain. I only take it at night. It definitely puts me into a deep sleep, but I’ve noticed I also sometimes wake up 3:30 and feel awake and like It’s time to get up. Now if I was waking up at 4:20 all of the time, it would make a whole lot more sense!
I can’t imagine taking a full dropper, let alone 3x a day. I’d be comatose and have major heart palpitations!
Hi Caroline59. Thanks for the clarification and sharing which product. There are so many various products out there and they are not all equal in quality and concentration. Some products have more exact dosing instructions than others. I'm surprised at how inexpensive Simply CBD Green is $18BP, which is $22.96 USD for the 30 ml bottle. My 30 ml bottle cost me $90USD!! (I want the kind that you have that only costs a fraction of the price ).
Oh my, check this out: If 1 ml of Simply CBD Green contains 26 mg CBD, and one drop contains 1.25 CBD, then one ml contains 20.8 drops. In comparison with my CBD, the 1/4 dropper or .4 ml that I took is equivalent to taking 7.2 of your drops!!! Oh my, that's a lot! No wonder I could feel it at that dosage, huh? The dosage is HUGE in comparison to your Simply CBD Green. It's no wonder that I thought that taking it 3 x a day was a lot! My error for assuming that "one drop" was a lot, when it's actually a very small amount.
On the Simply CBD Green website they seem a bit confused about the exact concentration of CBD in their product. They contradict themselves four times by stating it contains 2.5% CBD but later says 2.6% CBD, and then it says each drop contains 1.25 CBD per drop, then states 1.29 mg CBD per drop. Which is it? Not that that's much of a difference, but still. Their website states Simply CBD Green contains 26 mg CBD per 1 ml.
The CBD that I have contains slightly less CBD at 22.5 mg CBD per 1 ml. It has a dropper with lines on it to measure the exact amount.
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