Hashimotos or secondary hypothyroidism? - Thyroid UK

Thyroid UK

137,801 members161,621 posts

Hashimotos or secondary hypothyroidism?

hawkis profile image
12 Replies

Hello,

I recently had positive test results for thyroid antibodies, but my TSH and T4 remain in range, but low end. My doctor has suggested that I start treatment to prevent hypothyroidism developing. Actually I already have many key symptoms and I am struggling to cope. I also have a B12 deficiency, not confirmed as Pernicious Anaemia (reason unknown), for over 10 years, and is managed by monthly injections.

Previous tests over the past 10 years show that TSH, T4 and T3 have been consistently low end, but antibodies were negative one year ago, and positive 5 years ago.

My recent results are below. I have several questions:

1) Are my levels of antibodies high, they are not much over the range? And can they fluctuate in and out of range?

2) Given that my TSH and T4 results are within range, but low end, could this possibly be a sign of secondary hypothyroidism? I am concerned because I have had a variety of odd symptoms these past couple of years, that may relate a pituitary dysfunction.

3) Do you agree that starting treatment for hypothyroidism is a good approach, or could it mask/complicate a potential pituitary problem?

I appreciate there's a lot here, but I am new to this, and whilst I am very happy to have a supportive doctor, I am also worried about a potential pituitary problem. I actually would like to see an endocrinologist and have a brain MRI to look at the pituitary, but I think my doctor would advocate trying treatment first.

Many many thanks for any insights you can share.

- anti-thyroglobulin 14.9 (ref <4.1)

- anti-thyroperoxydase 8.87 (ref < 5.6)

- TSH 1.06 (ref 0.35 - 4.94)

- T4 11.42 (ref 9.01 - 19.1)

- T3 4.31 (ref 2.43 - 6.01)

Written by
hawkis profile image
hawkis
To view profiles and participate in discussions please or .
Read more about...
12 Replies
PurpleNails profile image
PurpleNailsAdministrator

“Are my levels of antibodies high, they are not much over the range? And can they fluctuate in and out of range?”

No they are not high, but they are positive. This is confirmation of autoimmune thyroiditis (Hashimoto’s). Yes Antibodies can fluctuate considerably & may even drop to “normal” negative values but a single positive result confirms autoimmune activity. Antibodies are as a result of the damage caused by immune system - they clear up substances which are normally there. The result of hashis not cause. Symptom’s don’t always correlate to antibody results.

2) “Given that my TSH and T4 results are within range, but low end, could this possibly be a sign of secondary hypothyroidism? I am concerned because I have had a variety of odd symptoms these past couple of years, that may relate a pituitary dysfunction.”

It’s possible you have pituitary dysfunction, but TSH is unreliable for many other reasons. As you have positive antibodies you definitely have an autoimmune occurring.

3) “Do you agree that starting treatment for hypothyroidism is a good approach, or could it mask/complicate a potential pituitary problem?”

In UK your TSH would have to be above range on 2 occasions (3 months apart) or above 10 or the FT4 & FT3 would need to fall to below or very low levels.

Your doctor is likely suggesting replacement as FT4 low & you have antibodies which indicates the decline is likely to continue/ worsen.

As you say you have symptoms so waiting will likely result in decline this can have an impact on other things such as nutrients. The longer the thyroid is struggling the longer it can take to recover.

Usually replacement is introduce gradually & increased.

Have you had other pituitary hormones tested? Is there a particular reason or symptom causing your concern you have a pituitary issue?

Important to test folate, ferritin, B12 & vitamin D, have these been tested?

hawkis profile image
hawkis in reply to PurpleNails

Many thanks for all your feedback, it's very helpful.

My B12 is controlled with monthly injections, but I'm actually trying weekly right now to see if it helps. The other vitamins and minerals, and glucose tests are all ok. I should've have added I have a super high ANA of 1:2560, which is related to anti DFS 70, but I guess now, the thyroid antibodies too. I've had increasing ANA levels for 6 years now.

As for the pituitary, I initially thought about it because the TSH is low end, and not increased, which I had taken to indicate secondary hypothyroidism, so I started to read about it. I've had a strange thing with the alignment of my teeth for the past two years, where my teeth have moved forward and separated a little, so now my back teeth don't meet, and it's hard to chew. I've seen a maxillofacial specialist, physiotherapist, orthodontist, and normal dentist and none of them have a clue, other than thinking it's a natural change, or dues to stress. It could be either but I have also read it can be an indication of a pituitary problem (acromegaly). I also recently found out, from a gastro investigation, that I have a dolichocolon, which again I have read is more common in acromegalic patients than the general population. I had had a similar gastro investigation 5 years previously, and this was not noted in the report, so I assume the dolichocolon has developed since then. I will have to ask for the old report/scans to be checked to confirm this. Plus, I find it hard to tolerate any physical exertion, and feel nauseous, weak, and sometimes have an unquenchable thirst all day after. Oh, and my blood pressure is always low end, which I thought maybe adrenal function related, and my resting heart rate is low (56bpm), which I understand is related to hypothyroidism.

Thanks again, I keep thinking I'm imagining all of this but I really am worried there could be a pituitary issue. I guess I will have to push for growth hormone tests etc.

greygoose profile image
greygoose in reply to hawkis

I've had a strange thing with the alignment of my teeth for the past two years, where my teeth have moved forward and separated a little, so now my back teeth don't meet, and it's hard to chew. It could be either but I have also read it can be an indication of a pituitary problem (acromegaly).

Do you mean your jaw has extended so that there are not now enough teeth to fill it? Acromegaly is due to over-secretion of Human Growth Hormone. Which would mean that your pituitary - as I understand it - is over-active. In which case, your TSH would be too high, not too low.

my blood pressure is always low end, which I thought maybe adrenal function related

Low blood pressure is often a hypo symptom. But, have you had your cortisol tested in any way?

hawkis profile image
hawkis in reply to greygoose

Hello, many thanks, yes my lower front teeth have separated a little and they now contact my top front teeth which blocks my back teeth meeting. So it seems the circle of the lower teeth has widened. I don’t know all the technical dental terms 😅. I had my cortisol tested when my B 12 deficiency was diagnosed in 2014 and it was high, but not since then.

Thanks again 🙂

greygoose profile image
greygoose in reply to hawkis

Ok, so neither of those things would appear to tie in with hypopituitarism/low TSH. But to know more, you need other pituitary hormones tested.

hawkis profile image
hawkis in reply to greygoose

Thank you 🙂

Wua13262348 profile image
Wua13262348 in reply to hawkis

Are you hypermobile at all? Many of us here who are hypothyroid are also hypermobile. I looked up dolichocolon as I had never heard the term and wondered if it is a recognised symptom of Ehlers Danlos. Sure enough, the first listing I came to says it is common in Ehlers-Danlos Hypermobility Type. There are 13 different types of EDS. One is a peridontal type. Marfans syndrome and CBS mutations which can present identically, as well as Loeys-Dietz Syndrome (separated out from being previously Marfans) can also have dolichocolon as a symptom. Unquenchable thirst sounds suggestive of diabetes, though hypothyroidism often messes with blood sugar.

hawkis profile image
hawkis in reply to Wua13262348

Hello, thank you, that's all very interesting, I have never heard of Ehlers Danos, but I will read up more - I do have very elastic skin 😄. The human body is fascinating! Thanks again, I will look up more this week

PRJ20 profile image
PRJ20

Hi hawkis and welcome to your first post on TUK, though I see you've been a member of the Pernicious Anaemia part of Health Unlocked for a number of years.

As you probably know, once one has [at least] one autoimmune problem that pre-disposes you to others and with over range TPO and TgAb + symptoms you definitely seem to be having something autoimmune going on with your thyroid.

Your results

TSH 1.06 mIU/L (0.35 - 4.94) 15.5%

Free T4 (fT4) 11.42 pmol/L (9.01 - 19.1) 23.9%

Free T3 (fT3) 4.31 pmol/L (2.43 - 6.01) 52.5%

T4:T3 Ratio 2.650 

Thyroglobulin Antbodies (TgAb) 14.9 IU/mL (≤ 4.1)

Thyroid Peroxidase Antibodies (TPO) 8.87 IU/mL (≤ 5.6)

healthunlocked.com/thyroidu... <Post here (from pinned posts section) of the two thyroid test results calculators used on the forum (chingkerrs and dopiaza), with the first one (chingkerrs) also having a section to put in results from the important core nutrients, including B12, which are frequently low in thyroid and other autoimmune disorders.

What picture the rest of the results portray and whether you need to/it would be a wise approach to start treatment for hypothyroidism, I'm afraid I feel neither qualified nor confident enough to give you any further advice or guidance. However, hopefully someone with more experience will be along soon.

In the meantime, whilst you're waiting for further replies, perhaps you may find these articles from Thyroid Patients Canada, by Tania Smith, useful:

thyroidpatients.ca/2020/04/... <The Spectrum of Thyroid Autoimmunity

thyroidpatients.ca/2021/05/... <23 Years Undiagnosed Central Hypo Case

Good Luck and hope you get more responses soon.

ETA: I took a while to write this as I had to go off and attend to something else and, whilst I did so,   PurpleNails has given you a really comprehensive, better/much more experienced reply which I didn't see until after I'd posted. Hope you still find this helpful, though?! ☺️

hawkis profile image
hawkis in reply to PRJ20

This is all great, many thanks for your feedback and the links, I'll certainly take a look at these. Also thanks for the calculator, I didn't know about that and can see it will be helpful. I've booked an appointment with my doctor next week, so I'll see what happens next. Thanks again

hawkis profile image
hawkis

Just saw my doctor and now have a referral to see an endocrinologist, but will probably take a few months. Thank you all 🙂

TiggerMe profile image
TiggerMe in reply to hawkis

👏👏👏👏

You may also like...

Secondary / Central Hypothyroidism Questions?

endocrinologist due to low T4 and normal TSH levels which can indicate an issue with the pituitary...

Hashimotos Hypothyroid

here's my story. I was diagnosed hypothyroid 12 years ago. I have Hashimotos also. The struggle to...

Hashimotos hypothyroid

lots of tests over the past year. MRI of both head and neck showing nothing but some arthritis in...

secondary hypothyroidism

cant find the results now but my tsh was below 1 and my t4 under the range. The highest my tsh has...

Discrimination against central/secondary hypothyroidism

because my blood test results indicate that my TSH does not rise as my T4 falls and I have...