Hi I was just wondering if anyone could help me with understanding my thyroid results. I have had extreme mental health problems for three years which just keep getting worse and have not responded to any treatment, so wondering whether there is a possible underlying cause relating to my thyroid function.
I had my TSH level checked in Nov and it was 1.85 (0.40-5.00). In Jan I had private blood tests for full thyroid screening showing:
TSH: 1.08 (0.270-4.2)
FT3: 4.5 (3.1-6.8)
FT4: 26.8 (12-22)
Thyroglobulin Antibodies: 10.9 (0-115)
Thyroid Peroxidase Antibdodies: 11.0 (0-34)
T4: 126.0 (59-154)
Reverse T3: 36.0 (10-24)
I repeated blood tests on Sunday but although FT4 and FT3 were requested the lab didn't do them. The only result I have is TSH which has gone down again to 0.66 (0.4-5.00).
Does a decreasing TSH level indicate anything? Does anyone have any advice regarding interpreting all these results and also any knowledge of anyone suffering from mental health issues that will not respond to treatment when there is an underlying thyroid issue?
Many thanks!
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RRDR
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Well, if you didn't know already, you have Hashimoto's and a very obvious problem converting FT4 to FT3. Insufficient T3 can lead to mental health issues.
We usually recommend that people try a gluten-free diet with Hashi's. Gluten is also known to cause mental health issues in people who are sensitive to it, so this may be another possible cause of your problem.
What exactly is Hashimoto's? I've never heard of it. I tried gluten free for a month but my mental health problems are so bad it just made me feel worse. Is there any medication I can take to help? I am seeing an endocrinologist on Thursday privately to discuss my results.
You're producing antibdodies to thyroid peroxidase (TPO) and thyroglobulin (TG). That is Hashimoto's Disease. The abs are within the lab ranges, but the fact that you are producing them at all indicates a problem.
I suggest you have a thorough read about thyroid conditions and related subjects on TUK's website: thyroiduk.org.uk Please inform yourself before you see an endocrinologist, because most of them are diabetologists and have very limited knowledge of thyroid conditions.
You can also search the thyroid forum using the search bar at top right.
Just start a new post if you have any further questions arising from your reading, or from your upcoming appointment.
Thanks for your advice. The problem is my head is so scrambled by my mental health problems I can't take anything in. I've just read Hashimoto's is hypothyroidism but I thought my T4 levels indicated hyperthyroidism? My symptoms do seem to fit in more with hyperthyroidism. I'm terrified all the time and the anxiety I experience makes me feel like I'm incapable of doing the smallest thing. The smallest noise makes me jump, my scalp is flaky and my hair is falling out (although that could be due to the medication I was taking), I've got numbness in my hands and feet, brain fog. I don't think I'll be able to explain anything to the endocrinologist as I can't think straight. I don't know what to do.
While it is possible to have both Hashi's and Graves' Disease (for the latter you would need additional antibody tests), your FT3 is rather low in the lab range. Your TSH is not suppressed. Overall, it looks - at least to me - as though you are hypo, rather than hyper, but another member with more knowledge about Graves' may wish to contribute here.
Another thing you need to pay attention to is your nutritional status, since a number of nutrients need to be at optimal levels for good thyroid function and conversion of FT4 to FT3. If you haven't already had a full blood count, B12, folate and ferritin tested, ask your GP to do these as soon as you can.
Do you have those test results?You are entitled to a copy of them.'Normal' is the standard GP response to any result in or somewhere near a lab reference range. Always post results and reference ranges.
Your unconverted FT4 could be driving down your TSH over time. Your concern about hyperthyroidism/Graves' is legitimate. Do have a read of Elaine Moore's website I linked to - this is not my area of knowledge, I'm afraid.
Below is a link to an informative site about Graves' Disease. I would really recommend reading the TUK website beforehand if it all possible, otherwise it will be very difficult for you to educate yourself about your health and participate in decisions about your care. Just read a section at a time.
I have felt all those symptoms when I am hyperthyroid. I absolutely agree with you that trying to talk to your doctor when you have brain fog and you crying and you can't remember anything is very difficult. My next appointment I'm taking my friend with me who knows all my issues so that can't happen did I just crap out in the middle of the appointment. Encouragement to you keep going. The T3 I'm taking now has helped tremendously. I already said above I'm taking NP 30 and 10 mcg Liothyronine (T3).
I seem to be reading these results very differently. What are you seeing that suggests Hashi’s? I’m seeing in-range antibodies and an over-range FT4 result. Everyone has some antibodies. These levels don’t suggest Hashi’s.
See my reply above. Hashi antibodies are present, even if in range. The lab ranges for these are basically irrelevant - if you're producing them at all, there is an autoimmune problem.
Because in all the years I’ve been posting here (under this and another user name), I’ve never seen a zero antibodies result. It would surely happen at some point. The presence of low levels of antibodies doesn’t automatically mean autoimmune disease—as far as I understand it. If it does, then absolutely everyone has Hashi’s!
Antibody negative Hashi's is a known phenomenon. We do in fact see negative antibody results on the forum, but it remains the case that Hashimoto's is the most common cause of hypothyroidism in the UK.
I agree with you Jazzw , those antibody test results do not confirm Hashi's.
Hillwoman Only positive antibody results confirm Hashi's, although a negative result doesn't completely discount it and it is possible to have Hashi's with negative antibodies. But you cannot categorically state that RRDR has Hashi's with those results.
Although Hashi's is the most common cause of hypothyroidism there are many other causes, there are many members here with non-Hashi's hypothyroidism
I have had many antibody tests in the last 29 years and have been diagnosed hypo for 45 years. My antibody results are always very similar to those of RRDR I do not have Hashi's and I know enough to be able to know the fluctuations in symptoms and test results where Hashi's is concerned and in 45 years I have not experienced any of those.
Thanks for your input. What would you advise I ask the endocrinologist? My symptoms are mostly psychological, terror, panic, jumping at noises, crippling anxiety. I've been treated for mental health problems for three years and they are not responding to anything. Now have hair loss and numbness in hands and feet.
Yes, I understand that, but in this case there are antibodies present, both TPO and TG... The body doesn't produce them for no reason, regardless of where they are in their rather arbitrary lab ranges. I recall a forum discussion with links about this within the last few months, and will post here if I can find it.
I have tests for both antibodies going back to 2001. The 2001/2002 tests were done when consulting with Dr P who would most definitely have said it was Hashi's if he suspected it. The others are part of regular thyroid/vitamin panels to monitor levels:
TPO
2001: 0.44 (<0.9)
2002: 0.4 (<0.9)
2015: 6.6 (<34)
2016: 11.2 (<34)
02/2017: 10.8 (<34)
06/2017: 13.2 (<34)
03/2018: 9.4 (<34)
11/2018: <9 (<34)
2019: <9 (<34)
TG
2001: 0.73 (<0.9)
2002: 0. 6 (0.9)
2015: 20.5 (<115)
2016: 21.6 (<115)
02/2017: 17.5 (<115)
06/2017: 13 (<115)
03/2018: 11.9 (<115)
11/2018: 13 (<115)
2019: 12 (<115)
There are slight fluctuations, as to be expected as nothing is static. We all have antibodies but very low level of thyroid antibodies doesn't necessarily mean that the immune system is going to attack the thyroid.
As I said, 45 years of hypothyroidism and low antibodies measured since 2001 and no Hashi's symptoms/fluctuations in either results or swinging of symptoms then I can confidently say I do not have Hashi's.
I wonder how much it matters .The treatment is no different .Going gluten free is said to help many but not all. It may explain variable results .But if you can have it with below range antibodies how can it be accurately diagnosed ?
and would you like to come in here? I see evidence of Hashi's (in-range abs, but they are present) and poor FT4-FT3 conversion. TSH is reducing in the presence of over range FT4, but FT3 is sitting in the lower half of the reference range. OP is concerned about being hyper rather than hypo.
Edit: just to be clear, this comment tagged SeasideSusie and SlowDragon, but the tags are no longer visible.
Just to be clear—my apologies if it came across as though I was being argumentative (I’m not doing too well at the moment and not thinking very clearly—really sorry x )—I wasn’t disputing that it was possible that RRDR has Hashi’s. Just saying that I don’t think that in-range antibody readings prove someone’s got Hashi’s. It’s my understanding that when antibodies are in range like this a thyroid scan is probably needed to diagnose Hashi’s.
I’m genuinely keen to know whether I’m wrong SlowDragon —always want to learn more! If Hillwoman is right, then I too definitely have Hashi’s because my antibody readings are similar...
Ferritin is likely too low. Should be half way through range
Ferritin is storage form of iron
GP or endocrinologist should do full iron panel test for anaemia
Iron is complex you can have low ferritin and iron levels fine
What’s your diet like?
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Have you got any other conditions, had stomach surgery or are you taking any prescription or non prescription medication? Any of these could affect thyroid results. If you are taking B12 supplements that contain biotin they can skew your thyroid blood test results.
As it stands at the moment your antibodies are in the normal range and thyroid tests don't indicate a thyroid condition per say, they are just a bit odd and it could be for the reasons I've suggested above.
No other physical conditions just extreme mental health issues. Not had stomach surgery. Taking antidepressants and supplements. Was taking B12 injections but had blood test in Jan before I started them and most recent blood test after I stopped them.
It would be worth getting copies of your blood test results then and find out what has been checked. There are lots of different kinds of antibodies but only a few are usually tested. Discuss it with your GP and request further tests. Maybe discuss trying a different Anti Ds to see if some symptoms are side effects. You could find out about other kinds of treatment for anxiety/depression like CBT, or a qualified hypnotherapist (not available on NHS).
I've tried 13 different medications, numerous therapies and hypnotherapy and nothing has made the slightest difference. I had a full blood test with private doctor and only thing that showed up was raised FT4 and RT3.
Thanks. I don't have depression though it's obsessive thoughts and terror. Is it worth seeing an endocrinologist with these results tomorrow if he's a dibetologist or should I wait for retesting of T3 and T4 levels before going to see a more specialised endocrinologist?
RRDR, sorry you are having such a horrible time. It's taken me many years to sort out thyroid medication and get it (almost) right. That was because I had a B12 issue. I only interject here because, I had perfect serum and active B12 like you and just thought I was B12 adequate. But someone trying to solve the thyroid medication issue kept pushing me to look at the B12 facebook despite my levels. When I read the symptoms for B12 deficiency, I knew immediately I had an absorption issue of some sort (still unidentified) which shows normal serum levels. I had neurological issues, peripheral neuropathy, small fibre neuropathy, insomnia, electric shock feelings, but my psych problems were enormous. Anxiety, panic, and sometimes depression. I have had 20 B12 injections to date and I have no more anxiety. My B12 deficiency was causing such damage. The shots have allowed me to increase my thyroid medication without .agitation and anxiety. Many of us have more than one auto immune type situation simultaneously. Having B12 (taking Folic acid with it) has also allowed my ferritin, Vit D, magnesium to normalise. Check it out, it may or may not resonate. My two sons have anxiety disorders which are now being investigated as B12 related too. Good luck, you will get better.
In my opinion, that wasn't long enough. You needed loading doses at the start and then weekly doses until symptoms disappear. Your GP didn't know what he was doing there.
I wonder if it's possible that the form of B12 you were receiving wasn't the right one for you?
Tracey Witty's B12 deficiency info website says that there are different forms of injectable B12: hydroxocobalamin, methylcobalamin, adenosylcobalamin and (mainly US and Canada) cyanocobalamin. "We are all different and we may respond differently to the individual forms of B12. Some patients require a combination of forms."
As others have said, it seems that "normal" B12 serum blood tests don't mean anything, especially if tested after receiving B12 treatment. Your levels must originally have been very low indeed for you to qualify for the injections, so your GP should be trying to ascertain the cause of the deficiency, not giving up!
Hi. I have seen similar results before when working as a psychiatric nurse in an elderly lady. She was the most agitated person I had ever met and like you her results indicated a T4 well over range. I think you are hyperthyroid. The problem we had in the hospital was that with a normal TSH the doctors could not really treat as a thyroid problem without getting into trouble so put her on lithium, a psychiatric drug which knocks the thyroid gland. It did take a while for her to settle. I can see it is likely you have a thyroid issue but you are unlikely to get any help from an endo ( I remember one psychaitrist telling me she was sick of mopping up the mess endos left behind). Even privately they are unlikely to support you or treat you. I would advise going with what the mental health team are offering drug wise as even though this is probably thyroid the medication they offer, especially if they suggest something for mania should help settle you. Other things that might help are fluoride. Homeopathy and although you wont be able to meditate try to take one mindful breath as often as you remember too. Avoid stimulating environments, so no bright lights, keep noise to a minimum, exercise might help, such a running, walking in the countryside. Try and avoid people as much as possible they wind every body up. You might find doing things like gently massaging your arms and being kind to yourself. I think the thyroid gland very sensitive to thoughts, events in peoples lives, the things going on around. It is very sensitive to envirement and I wonder if you have had a bit of a shock recently, something that has really shaken you up. Another suggestion off the top of my head is to try to swaddle yourself, so maybe roll you self up tightly in a quilt or blanket.
Thanks for advicr but this isn't a recent thing I've been feeling this terror for a year now. I've tried everything psychiatrists can offer except ECT and nothin has helped which is why I keep looking for alternative explanations. Tried walking, exercise, swaddling absolutely everything and nothing makes the slightest bit of difference. Thanks for trying to help though.
also get your ferritin up and try some B12 patches or injections. Disregard normal blood results re B12, they are very unreliable. B12 definitely worth a try for anything mental health.
You can just get some iron tablets from chemist, very cheap. I imagine the endo is going to disappoint. I feel for you as I remember this lady with similar results and she was in awful state. What drugs have the psychiatric team tried, can you do a list. They wont have tried every thing, not in three years. I am guessing they are saying agitated depression. Stay indoors as much as possible.
What was the B12 serum level before injecting? The level will be elevated after the injections for several months. Some researchers believe that there are B12 deficiencies where the B12 doesn't get into the CNS as well as it should. Serum levels are then falsely negative. This can be as many as 45% of patients. Why did you start injections and why did you stop? For neurological and neuropsychiatric symptoms, the recommended injections are alternate days as long as symptoms continue to improve. This can be difficult to assess and can be very slow - many months. The whole area is poorly understood and inadequately investigated with the NHS relying on tests that are just not good enough to be sure what is going on. Do you have any family history of B12 deficiency?
TSH level is quite sensitive to small changes in FT3 levels not to mention physiological stress. Hope you find a doctor with a good grasp of all these inter-related areas.
Sally56 sounds very similar. Hope these comments help.
Iam not sure if it is mentioned in this post but have you had the genetic testing done to see if you have a genetic issue converting t4-t3? And the endo might do further tests to rule out pituitary gland issues
I have no answers but my 19 year old granddaughter is suffering from mental health issues which is also getting worse. I keep telling them to get her thyroid checked and they thoroughly disregard me. In the past, I have not had good help from medical doctors regarding my thyroid so I always see an endocrinologist. At 17 I was diagnosed overactive and it reversed at 40 to underactive and I always take my meds with a glass of water at 5AM and wait an hour before eating breakfast. I am now 74 and still take my synthroid faithfully. They told me I would take it for the rest of my life. I wish you all the best in finding help quickly. God bless.
I know this is “out there” but I have found Reiki (energy healing) made a HUGE difference balancing my mental health complaints that were similar to yours. Also T3 is critical for me personally. Without it, I’m literally a scrambled, depressed, hot mess!
As for reiki, It’s a progressive treatment- meaning each session builds upon the last one. The first treatment I only felt more balanced but no other symptoms were relieved- I was a bit disappointed.. but I continued on every 2 weeks and after the 3rd one I felt amazingly well! Then we spaced them out to monthly... then, when ever I felt I needed it. It’s just a suggestion and my testimony- something to ponder if are open to something like that. Best wishes~
Have you tried being treated for Low T3? Objective is to introduce T3 slowly until the Free T3 measurement is at least above half-way point in the range. Yours is only 37.84% through the range. Some don't feel well until FT3 is in the upper quadrant of the range.
I can sympathize with the mental health issues because three years ago I had my thyroid removed because of hyperthyroid Graves disease. Since that time I have been taking nature throid a different levels did not help the crying. My current GP it's very astute and working hard on the issue, started me on P3 which has calmed my anxiety and the crying but still I have not got the level to stabilize. I am currently taking 30 mg NP thyroid and 10 micrograms of T3 liothyronine. Feeling better now if it holds. I also have had them suggest I take antidepressants but I know it's coming from the thyroid. So hang in there and I'm wish you the best.
RRDR, this must be so confusing for you and it's upsetting for all of us to read the desperation you feel because most of us have been there or are still there. I know when I was anxious I couldn't even face showering, I couldn't make a decision to save my life. My brain was fogged and fearful.
I want to just help summarise some of the things which have been suggested to you. I'm in Australia and know from this site that the U.K. and the NHS are behind in thyroid issues, but also in front with B12 deficiency. In fact, I follow the U.K. guidelines for my B12.
1. It is important that you calm down enough to start taking control of you health by reading, posting and following up on the suggestions made (I mean that in a kind way, not bossy). You are in control when you have information.
2. The endo may give you a diagnosis and further tests. However it is clear to a few of us that you have a High T4 and Low T3, (I don't know if you have Hashi's or Graves or what, I'm not that clever, my thyroid was removed and I hadn't heard those two terms until I joined this form!! Believe it or not!!)
3. After many attempts at many combinations of thyroid medication, I have settled on T3 only. T4 does not convert well to T3 in me. I have 2 genes which I have had tested. I have included the Thyroid UK link to the testing. thyroiduk.org/tuk/testing/D...
But of course you need to establish a diagnosis with the Endo. I don’t want to overwhelm you but this is info which stays here on this thread that you can refer back to later.
4. B12. 4 weeks of injections is not enough, if there is an issue? New blood cells take approx. 4 months to completely renew. If you have neurological damage then it could take longer. Here is a link to the B12 information healthunlocked.com/pasoc/po...
Once again I do not wish to overwhelm a very tired and stressed mind. But the information is here for you to refer back to.
I just see myself in you and know if I had the information I have now, my life would have so much different. And so can yours. Good luck at the Endo. Please post again.
I agree about your mental health being affected by thyroid levels when my TSH was 0.002 and I was suffering from hyperthyroid I was misdiagnosed for over 2 years. Even when I was eventually treated my GP wrote "delusional" on my records. This was 9 years ago and after requesting several times they remove the word they have refused. Even after my thyroid storm in July of last year my GP gave me a referral letter to see a private Endocrinologist he had written that the hospital staff first thought I had mental health problems when I was admitted to hospital. His letter is now in the bin where it belongs. I am not mentally ill just suffering from a autoimmune thyroid disease.
Thank you all for all your comments I must admit to being quite overwhelmed with all the advice but will try my best to work through it all. I will continue with B12 injections and work with endocrinologist to try and get to the bottom of this. Many thanks again.
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