I am very grateful to everyone on this site for helping me to better understand the various thyroid conditions and their effects.
I require your help once again.
By all accounts, it looks like I have secondary hypothyroidism. This is based on my test results and some of my symptoms. But a few of my symptoms are actually hyper and I am trying to find some data that shows that they can also be hypo, so I can show it to my doctor.
I have lost a lot of weight, have anxiety/nervousness, rapid HR, high BP and cholesterol too.
I am not finding these listed for secondary hypo anywhere.
If anyone can assist, please do.
Thanks,
DanteNXS
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DanteNXS
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Hi Dante,
The symptoms for secondary hypo are exactly the same as for primary......the only difference is that they can be far more extreme.....
I too am central Hypothyroid ( alternative name for secondary/ tertiary)
Weight loss can be your adrenalin compensating for lack of thyroid hormone.
Anxiety/ panic is very often caused by adrenalin compensating for lack of thyroid hormone.
Rapid heart rate.....ditto!
High cholesterol is very hypothyroid. Not sure about the blood pressure?
Central/secondary hypothyroid people have an incredibly sensitive TSH
If you do have secondary hypothyroidism it would also be a good idea to have your other pituitary hormones tested just to make sure that they are not effected too.
My central hypothyroidism is isolated meaning that only the TSH is low.
Posting your most recent blood results might help
Hope this helps
in reply to
joesmum,
Dante's previous post showed low Prolactin together with low Follicle Stim Hormone. .. .. indicative of pituitary problem.? .
Lots of other test results too.
Flower
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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal before applying any of these suggestions.
joesmum you said, "My central hypothyroidism is isolated meaning that only the TSH is low."
Can you explain this a little further please joesmum ? My TSH has apparently always been low. Not had my pituitary hormones checked as far as I know, but believe I am having trouble converting. Having my DI02 checked currently.
Thanks
Sorry Dante, I see that you were diagnosed with subclinical HyPERthyroid. You may have to ignore everything I've said!!
From the list of awful symptoms I'm assuming you are under the care of an Endo??
joesmum, the problem Dante has is that her subclinical hyperthyroidism was diagnosed on the basis of a low TSH only. The low in range FT4 and FT3 she has were considered to be irrelevant. But of course, people on this forum consider it to be highly relevant, and have suggested that Dante suffers from central hypothyroidism, not subclinical hyperthyroidism. Whether this is caused by pituitary and/or hypothalamus problems I couldn't say - I'm completely out of my comfort zone on that subject.
FOLLICLE STIM HORMONE is (low) normal range (3.8) 2.0-17.7 mIU/mL
LUTEINIZING HORMONE is in the normal range (4.2) 0.9-10.6 mIU/mL
I thought these were only produced by females! Aaaagh!
My apologies for my embarrassing ignorance!
Central hypothyroidism is a name used to cover both secondary hypothyroidism (caused by a dodgy pituitary) and tertiary hypothyroidism (caused by a dodgy hypothalamus). If your TSH is low and so are your FT4 and FT3, there is no way of telling whether your problem is caused by your pituitary or your hypothalamus. You need proper testing. Secondary hypothyroidism is more common than tertiary.
Good luck. I don't know what tests are required for central hypothyroidism, other than testing the output of the various hormones that the pituitary and the hypothalamus produce. I'm not sure what will be gained from a CT scan - but that doesn't mean anything due to my ignorance on the whole topic!
It is often difficult to distinguish between secondary and tertiary hypothyroidism so the term CENTRAL is used.
Both primary and central are treated with the same thyroxine replacement medication.
When treating CENTRAL ( secondary/ tertiary) Measuring TSH is useless. The guide is measuring FT4 and FT3 both of which need to be fairly high in range to alleviate symptoms. This of course will vary from person to person.
A low TSH and low FT's is indeed indicative of central hypothyroidism but you need to see an Endo to have this diagnosed.
Hallo, my hypothyroidism is also central: low TSH AND low T3 and T4 (also fT3 and fT4). Treatment is like for "normal" hypothyroidism, but it seems to be more difficult to find the right dose. It started for me 6 years ago, and I haven't yet. CTs are recommended because sometimes central hypothyroidism is caused by a tumor, and sometimes the tumor affects other hormones (I have no tumor, and no other problems). After you get complete diagnosis, don't forget to check if you have also a conversion problem: low fT3 even with high FT4. Good luck!
I got so frustrated by the hopelessness of the endocrinologists I saw telling me my test results are normal, so started taking NDT in June, & making sure I have adequate vitamin & minerals. The symptoms I've had for 37 years are still present, but greatly reduced.
It's a microadenoma, under 10mm, so it's monitored with an MRI scan every few years. The operation is nasty, but I'd probably have opted for it, knowing all the problems it's caused. I had symptoms from my teens, followed by hypo symptoms my whole adult life. The tumour was only diagnosed 5 years ago following routine blood tests.
No such use with TSH etc, but the NDT has certainly helped.
Nothing much I can add to all that, except to say that high blood pressure can be due to being hypo. Although doctors tend to think : high bp = hyper, low bp = hypo.
As I've said before, you cannot catagorise symptoms in that way, because so many cross over. And lots of hypos - myself included - have high blood pressure. And I'm pretty sure that is in a lot of lists of hypo symptoms!
I lost weight, but I think that was more to do with cortisol problems, I just didn't eat as I never felt hungry. My heart rate is never really high though, just erratic.
I have lost almost 40 pounds in 4 months. I am never hungry and have to force myself to eat. I have been drinking a very high end protein shakes, to compensate.
What are you doing about your cortisol levels?
My HR goes up every now and then still, and I also get the palpitations, even though I am on propranolol.
I have a small amount of DHEA on prescription, take adrenal cortex and meditate. My levels aren't low enough to be Addisons so the NHS wouldn't treat. Last saliva test was at the low end of normal all day. I don't lose weight any more (I think) and I don't get violent headaches, with back pain, nausea and vomiting and I don't faint, and I rarely have dizzy spells on standing, so I'm pretty happy.
I have palpitations all the time, but the cardiologist said it wasn't life threatening, so I just ignore it now. My heart plays reggae!
Glandulars are not that expensive, just in that particular case. The ones they have for thyroid, adrenal, and a like are very cost effective. I can get a months supply for around $75.
If you google "glandulars" you will find various companies selling them. I have done some in-depth research and found some highly qualified holistic doctor recommended sources. Then I did more research on them after that.
What I liked most, was the fact that glandulars actually were used all the time, prior to the pharm companies getting involved, and they worked very good, and are still being used all over the world.
Even by the pharm companies.
So it might be a good idea to try them, especially when they are natural, do not have any adverse side effects, feed and strengthen your glands....
Animal extract thyroid preparations were developed in the late 19th century, and are still in use today for the treatment of hypothyroidism under names such as Armour and Nature-Throid (Natural Desiccated Thyroid.)
Glandulars are sold as having had the hormones previously removed but everyone claims them to still retain a little and they can have adverse effects and should be used with respect.
I had a very bad reaction after taking Nutri Adrenal Extra and Nutri Thyroid.
I have since tried Dr Wilsons Adrenal Rebuilder with adrenal cortex (no adrenaline), gonadal, hypothalamus and anterior pituitary, and Cytozyme-PT/HPT and LV but still can't tolerate any of them.
I was under the care of Dr Barry Peatfield who is a highly respected endocrine doctor in the UK but suffered psychosis. I discussed this with him at the time but was very ill so don't remember it all. However, I understood that I had accumulated a large amount of toxic T4 (unused unconverted hormone) after four years of medicating T4 alone ( that I can't convert due to impaired DI02 gene). This could have resulted in a high level of Reverse T3 that sent me through the roof when glandulars were introduced. This can not be proven as I was never tested.
I tell you this because you have a high Reverse T3 level and I would suggest exercise caution.
Having said that, you are correct in saying glandulars are not expensive and are suited to a great many people who benefit from them.
Flower
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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal before applying any of these suggestions.
Thanks for the advice, I will take that into consideration. Do you have any suggestions on what I could possibly do/take/incorporate into my life that might assist me in living a "normal" existence?
How do I get my rT3 down? I am struggling to make sense of all of this, and my doctor's are no help.
I truly respect the people on here and value their input.
I just want to get better (not unlike the folks on here) and it is not easy.
A while ago there was a discussion about Metavive thyroid "glandular".
When we came to talk about costs, and given that there was general agreement that they are very much less potent than prescription desiccated thyroid, they did look expensive.
Of course the numbers had to be guesswork, but it certainly appeared that, for example, a readily accessible source of Nature-Throid is considerably less expensive for an equivalent T4/T3 dose. And you have a pretty good idea that it will be the stated potency and consistent.
I know there are sources of Nature-Throid which can supply the UK and many other countries without demanding a prescription. My understanding of USA importation rules is somewhat lacking but I get the impression quite a few do manage to buy.
I do not have any suggestions of what to medicate or supplement as (apart from T3) am not familiar with treating high RT3.
I have read that any given T4 can convert to T3 and encourage even further RT3 to be made so the point of medicating becomes futile. It is a very specialised treatment as symptoms, sex hormones and other have to be considered and there aren't many doctors who understand it.
Did you read previous link I supplied on Tissue Resistance To Thyroid Hormone?
This is an interesting read.
Have you had your TBG measured?
Have you considered dysalbuminaemic hyperthyroxinaemia? This is all bit beyond me but will show high RT3 and within range T4 & T3.
Flower
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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal before applying any of these suggestions.
dysalbuminaemic hyperthyroxinaemia doesn't match my levels. It states that consistently elevated total T4 and elevated or normal free T4 values with normal TSH levels.
I am sorry to hear this. It is discouraging for you to realise that your doctor does not understand your condition.
Is there a way of finding a sympathetic knowledgeable endo in the US?
You could try a question in a NEW post on this forum as we have quite a few american members now.
Also re Helvellas suggestion above regarding Nature-Throid, you could post a NEW question asking if members can pm you with any details.
I am sure we have some american members medicating on this.
We have all had our troubled journeys to walk .. after all.. that is why we are all here. Members are extremely supportive so just keep posting questions and frustrations.
I wish you well, Flower
……………………………………………………………………………………………………………………
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal before applying any of these suggestions.
It's your high RT3 that's the most interesting thing about your results. Your FT3 to RT3 ratio is 9.4 - in a healthy person it should be 20 plus (I think...).
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