Can hyperthyroidism or hashimotos hyperswing fluctuate?

[Justiina]

I have good and bad days. During winter it was mostly bad and no idea what my thyroid would have been then but since I started to feel a bit better I seem to have good days and then tougher days but the worst symptoms have not come back.

I assume its rather hyperswing than graves because I was hypo two years ago ,and basedow based on antibodies it is not.

I assume having over range ft3 and top of range ft4 can make you feel sick despite either one were not ridiculously high? As it's off of your biological set point and each are individual reacting differently.

Been physically quite active ever since I started to feel a bit better so could be just that my body is still worn out and symptoms I experience are that?

Hate having questions, have to wait until 29.4 to see a doctor and because of covid19 there is no guarantee I get to see endo year 2020!!!!

Is it possibile to experience frequent hyperswings like twice a year ?

[ling]

What is your TRAb level and what's the range?

When was the test done?

[Justiina in reply to ling]

19th on March.

Result <1.5 and range or limit is 2.9

I have no idea how to interpret it.

My TSH was < 0.01

Ft4 20.4 (10-21)

Ft3 8.3 (3.5-6.5)

[ling in reply to Justiina]

Was your TRAb antibodies tested?

[Justiina in reply to ling]

We call it TSHrab which I think is the same? Tsh receptor antibodies?

It was that <1.5

[ling in reply to Justiina]

Ok.

Limit is 2.9, what is the low end of the range? 0.00? So 0.00 - 2.9?

[Justiina in reply to ling]

Don't know actually it's just 2.9 and anything above positive, 2.9 mild, 3.3 moderate and so on.

[ling in reply to Justiina]

I guess in that case, using the word "limit" is pretty misleading, as one then assumes 2.9 is the maximum of the range.

Regardless. So based on 2.9 being mild, and your result is <1.5, you do not have Graves. Has your TRAb been around this range since u started testing?

Any test for TPO?

Is your Hashimoto's a confirmed diagnosis?

Your TSH < 0.01, is interesting. Does it fluctuate?

You are certainly right about one thing - "As it's off of your biological set point and each are individual reacting differently."

Numbers are just that as far as the thyroid is concerned. One person may feel alright with X number, but another person may feel quite sickly.

Lastly, if it's Hashimoto's, and the thyroid is in the process of burning itself out, i think its apt to move back and forth between hyper and hypo and plateau. Even in euthyroid people who do not have Hashis, thyroid levels fluctuate and one can feel it and see it in the symptoms.

[Justiina in reply to ling]

The paper copy only states 2.9 as a limit so had to look up lab manual to see if it had more information.

I have had the same test done two years ago when my frees were bottom of the range and TSH ~ 3.6

Then it was <2.9. I had it tested because I have had yersinia enterocolitica which has connection with basedow.

On February I had TSH 0.04 and ft4 was 15.4 (10-21).

Before that I had not had thyroid tested for two years after the "hypo" state settled.

I have once had borderline TPO but that's it. I am not usually getting tested while symptomatic and have to get tested privately which over here costs a lot and I can't afford all the tests.

This winter I had very bad hyper symptoms so I have to assume had I been tested while most symptomatic the numbers could have been worse. I felt so sick with classic symptoms which mostly have started to pass.

[ling in reply to Justiina]

How did u get yersinia enterocolitica? Was this temporary?

Do you have any other medical conditions?

[Justiina in reply to ling]

No idea how I got it as I had no gastric symptoms but it was 1993 when I had first antibodies tested.

I had injured my knee 1991 and it suddenly got swollen and I had episodes of high fever and what they thought was a- strep. I have seen copies of my labs and swap was positive only once so rest of it was laryngitis which is now known common in chronic yersinia. They only looked arthritis and reactive arthritis back then.

They drew synovial fluid from my knee many times and it was always murky like in infection but despite the presence of yersinia antibodies and episodes of high fever and laryngitis they did not do anything except gave me antibiotics for infection they thought was a-strep.

Then I ended up having sepsis type of infection, got long course of antibiotics which ended the infections but I still had yersinia antibodies 2002. Those were tested as I fell ill on holiday but they were too low to connect with that holiday.

Thats why my functional doctor suspected basedow.

I have B12 deficiency, getting injections and MS, diagnosed a year ago but only few inactive lesions on my brain, considered very mild MS.

I am not on any medication, I don't even take painkillers as I have no that type of pain.

[ling in reply to Justiina]

What is the Basedow connection to yersinia?

Clearly u don't have Basedow/Graves right now as the TRAb antibodies show.

Testing TPO might help indicate where u stand with the Hashimoto’s. Maybe u can get it tested at the next round of testing? I understand re expensive tests and also do some tests selectively due to costs.

Did any doctor ever confirm your Hashis?

TSH was < 0.01

Ft4 20.4 (10-21)

Ft3 8.3 (3.5-6.5)

These results would seem to indicate you're on the hyper end currently but glad to hear u are doing better.

[Justiina in reply to ling]

I guess the connection between yersinia enterocolitica and basedow/graves is antigenic mimicry , yersinia enterocolitica having similarity with thyrotropin receptors.

Funny extra, I uploaded my genetic data to impute.me and compared my data to UK biobank and chose hyperthyroidism and based on that comparison I had 99% higher risk for hyperthyroidism than average population, it was marked as very high risk. So basically I have genetic vulnerability to hyperthyroidism, which is marked on all genetic sites but it's just vulnerability, when we talk about genetics it needs a trigger.

Yes I will try to convince the GP to run more tests, but I am not very optimistic. When I had hypo phase it was so only controlled for a year, no extra tests nor effort to find out why. And it wasn't the first time my thyroid numbers were wrong but it never got investigated as it passed eventually .

I can only hope my functional doctor would figure it out but he is hunted down because of treating thyroid patients with T3. He might lose his licence to treat thyroid patients even though he starts T3 with very few patients. He is pretty much only smart functional doctor over here in Finland.

[ling in reply to Justiina]

That's so interesting.

How did u get your genetic data?

Was there a trigger?

U were on medication for hypothyroidism?

Why were your wrong thyroid numbers never investigated? What's up with the healthcare system?

[Justiina in reply to ling]

I did family research and realised I can use the raw data to check out some genetic vulnerabilities.

I don't know what are triggers, at least I have had stress but started to feel unwell after MRI with gadolinium, then lumbar puncture and then tetanus and pneumonia vaccines.

I don't know why my hypo phase was just controlled and nothing else. They refused to believe when I said I can feel it so I had myself privately tested , those test results are on my profile. I had very classic hypo symptoms then ,ridiculous fatigue , constipation and was freezing, had to sleep clothes on under two plankets. I also had iodine deficiency, low urine iodine and high thyroglobulin. Thyroglobulin started to drop when supplementing iodine but I can't take lot , I can't tolerate much iodine which would indicate some sort of autoimmune issue but who knows when I am not properly tested.

I hope my functional doctor has some ideas what to do next if GP ignores my thyroid tests again.

[ling in reply to Justiina]

I guess subsidised treatment is the same around the world - generally sub standard and u have to pick up the slack yourself : ( I haven't had a single reliable doctor since I was diagnosed?! It's just incredible.

Your earlier post really resonated with me. Genetic vulnerability and triggers. That pretty much describes my Graves.

I wish you had a better doctor.

I hope u at least have your TPO tested. Antibodies can really be helpful in guiding treatment.

You are in Finland? How's things there now with the virus and it's disturbances?

[Justiina in reply to ling]

My childhood friend who is eye surgeon asked me do I feel they just hope the thyroid issue would just vanish and they try to stall testing and treatment. I had to say yes. My friend was GP before switching to eyes, now she runs eye clinic in university hospital so she might know it's more common than uncommon we often get poor treatment because no one wants to treat thyroid. She is very straightforward, she hates when patients do not do their best to stay healthy but she also hates doctors who aren't doing their job to help patients. We often talk about it, for her its about doing her best to help.

So if it happens here it must happen everywhere and that's why it seems so hard for many of us to find someone good !!!! I guess thyroid isn't challenging enough for many doctors to really understand or maybe it's too challenging as they would need to tailor the treatment individually.

In Finland covid19 hasn't been a big problem. Epidemic did not land northern Finland where I live as we went to full lockdown early on.

The first covid19 happened over here on January , it was a tourist but as it was handled very well and patient was in full isolation in main hospital no one else got infected.

We only have an issue on counties next to boarder of Sweden as many Finns work there and Sweden didn't do much covid19 restrictions. Fortunately those have not spread through north as distances are long and we only have two big hospitals capable of handling covid19.

Today I went to my local GP and first they ask you to disinfect your hands and give you facemask. All staff and patients wore facemasks. We are slowly opening up services and courage people to go to doctor and dentist, if you are sick you are treated on different part of the hospital.

Got referral to more bloodtests and then hopefully referral to endo but that might not happen as endos are on call for covid19 wards. Based on today's appt I fear I get again on this area where I am just controlled.

[ling in reply to Justiina]

Thank you very much for taking the time to share : ) It's really interesting.

The smart countries in this coronavirus fight, are the ones who locked down from the start and not try to manage the constantly changing situation. It's a lot of time effort and work, and could potentially distract from other important things which are happening with the virus.

Has the lock down in Finland been largely lifted?

What were u referring to in this sentence- "Based on today's appt I fear I get again on this area where I am just controlled." ?

[Justiina in reply to ling]

i was referring to my appointment about the thyroid. I did get referral to bloodtest but the interest they showed was basically 0, being more happy about me feeling slightly better than actually figuring out what is going on to find the root cause.

We are slowly going for closer to normal, step by step opening up services one at the time. Large gatherings are still banned as well as festivals and happenings like that for rest of the year. Fortunately social distancing is already build in us finns it is easier for us as we so much appreciate our personal space.

[ling in reply to Justiina]

Yes, just saw an article about the Finnish calibrated reopening. Ya, that's the way to go.

Have u been feeling alright?

[Justiina in reply to ling]

I am not sure how I feel 😄 still easily warm but I sleep heavy and put up couple of kilos. Just very drowsy and unwell. Will see on Thursday after the blood test am I going hypo. Symptoms indicate that but it might be just that I am so worn out after so far mysterious hyper period.

[ling in reply to Justiina]

Yes, can identify with some of that. I tend to overheat very badly.

I discover what my symptoms are as the condition changes or is unstable.

Other health conditions also interfere.

And stress is a big no no.

Do u have work stress as well?

How long was that hyper period u mentioned?

If it's not too much, please let me know how your results go.

Sorry to ask but are u on any medication right now?

[Justiina in reply to ling]

Just got some of my results. Ft3 is done in another lab so that I will get tomorrow.

TSH 0.18 (0.5-3.8)

Ft4 10.1 (10.2-21)

So feeling hypo isn't so far from the truth. But I wonder if this is considered transient and left this way and controlled for who knows how long and wait it will just normalize.

Bad thing was that the doctor had made a note of my appointment last week that patient BELIEVES she was hyper or hyper type of episode caused her symptoms.

Its not about me believing anything as I had two tests confirming something is going on. If test results and symptoms match then it's 1+1 = 2. Cause is unknown but symptoms match with test results. I did not make it up or I did not say it's thyroid without testing. Sigh.

[ling in reply to Justiina]

These bloody doctors!

The way he puts it is plain insulting.

[Gigi216]

I have hypothyroidism but Elaine Moore has a wonderful website where she discusses hyperthyroidism lots of information! She was in the medical field and has written many books about hyperthyroidism I’m sure you could find something very helpful on her site good luck it’s so difficult to get thyroid right! Hyper and hypo is hard

[Lora7again in reply to Gigi216]

She helped diagnose me 12 years ago when my GP told me I had the menopause.

Here is a link for her site.

elaine-moore.com/

[Justiina in reply to Gigi216]

Thanks I will take a look. I just hate waiting for the doctor and fear they explain this with something else. I want to know and understand so I can defend myself.