I hope everyone is doing good. I posted a few months ago about my symptoms, and the feedback from this community helped me to get my diagnosis of hypothyroidism (thank you).
So, I have some more questions specifically for those out there who are knowledgeable about secondary hypothyroidism. The “cause” of my hypothyroidism is unknown, and I wanted to know what are signs of secondary hypothyroidism/hypothyroidism associated with pituitary function??
Being newly diagnosed, I would really appreciate any insights. I am 23 years old. I am on 50mcgs of levothyroxine currently. I was vitamin D deficient as of blood work done about a month ago (level 18). I take liquid vitamin D.
Some of my symptoms have been better, and my TSH has gone down from a 4.79 2 months ago, to a 3.49 a month ago. My doctor would like to see me at a 2.2.
I got a thyroid ultrasound and the technician mentioned that my thyroid had no nodules, but was, “small.” I had my antibodies checked about 2-3 months ago (when TSH was at 4.79), and the doctor mentioned T3 was low... I didn’t get the actual number but I plan to for my records.
I also went to a cardiologist recently, and he suspected that I have Preventricular contractions (PVC’s). He didn’t give me anything for those, and suggested I just keep an eye on it.
I want to know if I should ask for an MRI/scan to look for a tumor ? I have heard that having a small thyroid gland can indicate secondary hypothyroidism... I also have some symptoms that may indicate low estrogen, and am looking for insight on if that is a sign of a pituitary issue?
I hope this makes sense, and appreciate any advice or insights.
Thanks!
Natalie
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natjcole
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What were your TSH and FT4 results, including reference ranges, when you were diagnosed.
Central Hypothyroidism - problem with the pituitary is Secondary Hypothyroidism, problem with the hypothalamus is Tertiary Hypothyroidism - is suggested when TSH is normal, low or minimally elevated with a very low/below range FT4 level.
If you don't have the results then ask your surgery for them - a print out will include the result plus the reference range.
Some of my symptoms have been better, and my TSH has gone down from a 4.79 2 months ago, to a 3.49 a month ago. My doctor would like to see me at a 2.2.
Then your doctor is going to keep you unwell. The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
50mcg Levo is still a starter dose, an average dose is 100-150mcg, some people need more. Retesting and increasing Levo by 25mcg every 6-8 weeks is normal protocol until your levels are where they need to be for you to feel well.
Are you in the UK? If so I can give you some links to information from the NHS about target TSH levels. If you are not in the UK I doubt they'll be of any use or accepted by your doctor.
Thanks for getting back to me so promptly. My TSH when I was diagnosed was at 4.79. And I’ll run that by my doctor regarding an optimal level being at 1 on Levothyroxine (I was not aware). Is level 1 where most people feel best who have hypothyroidism?
I am in the US, but am hoping my doctor will be receptive to this feedback.
Slow Dragon, I’m happy to hear that the PVC’s may improve when my levels decrease. I am only currently taking B12 and liquid vitamin D. I have not have my Vitamin D re-checked since starting on Levothyroxine, hoping to do that in the next few weeks in my next round of blood work.
Was only TSH tested? You need FT4 tested prior to diagnosis to know if it could possibly be Central Hypothyroidism.
I didn't say that a level of 1 is optimal. Optimal is a very individual thing, we each have our own optimal level. I said "the aim of a treated Hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well."
Also, do you know what an FT4 value would look like to indicate central hypothyroidism??
Below range or on the very bottom limit of the range, eg if range was 12-22 Central Hypothyroidism if FT4 was maybe 12.1, 12 or less than 12.
The reason FT4 would be that low is because when the pituitary or the hypothalamus aren't functioning properly the signal - TSH - that tells the thyroid to make thyroid hormone (T4) doesn't get sent so the FT4 remains extremely low.
Hi sorry in butt in on a conversation m, but I would be very interested about links on target TSH levels you might have if you wouldn’t mind sharing them with me? My doctor isn’t interested, as long as I’m on 125mcg of Levothyroxine and your within range 😒
Quick reply as I'm just about to sort out my evening meal. They might not do you any good with your TSH level of 2.07 though, you'll just have to play on the fact that you would probably be better at the lower end of the range they quote.
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
How can blood tests be used to manage thyroid disorders?
.....
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.
.....
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
You can obtain a copy of this article from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
It will be really useful to get your TSH, fT3, fT4 results and especially the ones before you were prescribed levothyroxine. It’s possible you have central hypothyroidism although it is uncommon. There can be other causes of central hypothyroidism, it doesn’t have to be a tumour although most tumours are benign.
Thanks so much for your insights! My TSH was a 4.79 before I started on Levothyroxine. I will need to get a copy of the other values (ft3, ft4), the doctor had mentioned that T3 was a “little low...” but had said they were overall, “normal.” Will update this chat when I get the exact values.
As jimh 111 suggested, there are various reported causes of CH so maybe try to find yours eg via medics (though may be difficult to identify)? My thyroid values indicate CH, as also advised on here. But, rather than treat with levo, I'm focused on treating my root cause which I believe is a prescription drug taken years ago.
No problem. The allopathic treatment for CH appears to be levo but personally I believe in trying to find the root cause, where that's possible. Feel free to stay in touch either via pm or openly on the forum.
Your levels are not indicative of secondary hypothyroidism. If you get your TSH down and Frees up but still don't feel better, I recommend Synthroid or Levoxyl. Many don't do well on the US generic levothyroxine (I was one of them). Most do feel best with a TSH closer to 1 and Free T3 in the upper 1/4 range-around 3.75 on a standard lab. As your TSH decreases, your Frees should increase (unless you don't convert well). Make sure you take magnesium (such as glycinate) and K2 with the D (and only take D3).
Why do you think OP does not have indications of Central Hypothyroidism?In the Uk guidelines suggest TSH indicating Ce H will be low or slightly raised and FT4 low. OP doesn’t know her FT4 yet (unless I missed that).
If there are indications that can rule it out I would like to know about them .
Hello! Her TSH isn't low. It's high. With secondary hypothyroidism, TSH will also be low. She mentioned her Free T3 was low. The high TSH and low Free T3 is typical with primary hypothyroidism. This page is great to determine different thyroid function. online.epocrates.com/u/2911...
I was thinking that if her FT4 turned out to be below range her TSH would be expected to be higher for overt hyperthyroidism. Her TSH of 4.79 would then be seen as ‘slightly raised’ possibly suggesting Central hypothyroidism. My TSH was about the same on diagnosis with below range FT4 and that was suggested to me.
I say "high" TSH because it is not optimal (even if it is still in the lab range). Primary hypothyroidism is overt hypothyroidism-the most common type.
I have secondary hypothyroidism because there is a problem with my pituitary gland which is not triggering the TSH. This is why I was not diagnosed for many years. My TSH is always low, usually around 0.01 mu/L. An endocrinologist finally diagnosed this after years of me being fobbed off as, according to the GP, I could not possibly be hypothyroid unless my TSH was elevated. Sorry, that probably doesn't help you but just wanted to say that this is what secondary hypothyroidism is, or at least one version of it. There may well be many others.
Thank you yes. I've been taking 125 mcg levothyroxine for many years now and am doing OK. It is not as good as the Armour Thyroid I used to take before that though when I got it direct from the USA myself.
I think it is available through private prescription from private doctors and will no doubt cost a fortune. It was over 10 years ago now that I stopped taking it. There was an issue with both the supply and the quality at that time.
It gives you info on the TSH of healthy people with no known thyroid disease.
Your doctor specifying that his/her aim is to get your TSH to 2.2 suggests to me that he/she is aiming to get your TSH to middle of the reference range. But healthy people don't usually have a TSH this high, so why should people who have thyroid problems?
I’ll have to check this out. You raise a good question regarding my target TSH being set at 2.2... a few others on this forum have commented on this being high as well.
I’m going to mention this concern at my next appointment. Thanks so much for your help and take care!
The source of the table of TSH levels by gender and age in the link I gave you is Table 3 from this research paper (you'll have to download it or open it in your browser) :
You might not have to use them with your doctor - but have them in reserve just in case. And there is still no guarantee your doctor will pay any attention to them. Some doctors seem to just put their hands over their ears and go "Lalalala, I'm not listening"
Humanbean - I have started to notice the “la la la” pattern with doctors. Took me years and years already to find a doctor to even test my Thyroid because I am “young and fit..” Thanks a bunch and take care!
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