New here, trying to get help for hypothyroid symptoms

[GussyG]

Hi there, I was wondering if any of the incredibly knowledgeable members could help me as I’ve got myself into a bit of a hole. I’ll try to summarise my history as best I can, but I apologise as this is very long!

My journey began almost 3 years ago when I went to my GP with classic symptoms of perimenopause, insomnia, hair loss, fatigue. They put me on HRT which has been a rough ride, but I stuck it out and I’m still on it today. I’m not sure it actually helps tbh, some days maybe yes, other days it makes things worse. (Side note: I have a hunch the additional oestrogen might have contributed to the cascade of events I’m about to describe..).

Anyway, at some point I got fed up with my symptoms and switched to a private menopause specialist who thought it prudent to check my thyroid and iron levels. The results came back and I was told ‘all is normal and good’ but being able to see the results on Medichecks and as an athlete I wasn’t happy with my ferritin being 35.5. This made me question the doctor and my other results (TSH 2.97, T3 4.7, T4 17.4), and that’s when I started digging into the world of ‘Optimal levels’….

I decided not to continue with that doctor because of the above, but also I couldn’t afford it. I decided to keep an eye on my own blood work and supplement to get my iron levels up.

Blood work in August this year confirmed i’d made good progress with ferritin at 70.2. However vit D came in as 103. It was this test which also flagged my thyroid:

TSH 5.14 (0.27 - 4.2)

T4 13.7 (12 - 22)

T3 4.6 (3.1 - 6.8)

TPO 17.7 (0 - 34)

TgAb 17.3 (0 - 115)

I also noticed that my general health started to decline including a tightness in my neck, an increase in weight and more hair loss, but I stupidly ignored it as I had two major cycling competitions coming up, and I promised myself to follow it up afterwards.

I got through my competitions and did pretty well, but not as well as I should have. A week after returning my health completely crashed. I contacted my GP about my symptoms and TSH result but she ignored this and put down ‘minor fatigue’ and told me to get a blood test. I had to wait 3 hours for the test (full panel) which was taken at midday and guess what? My thyroid results returned as ‘normal’

CRP 1

Ferretin:72

Vit D: 128

Serum b12: 1305 (182 to 692)

TSH: 2.26 (0.35-4.94)

T4: 10.4 (9-19.1)

T3 X

TPO X

TgAb X

Haemoglobin 150 (115-148)

Haematocrit 0.449 (0.350-0.450)

Serum triglycerides: 1.8mmol/L no range

Serum HDL cholesterol 1.7 (0.9 to 2.0)

Serum non HDL cholesterol 3.6 no range

Calculated LDL 2.9 no range

Renal function stable Can add if needed

Side note: Vit B12 being high is a strange one. I supplement with a multi B complex but not sure why it’s so high? I’ve since stopped.

I was heartbroken looking at the TSH result on my NHS app and had to sit through the follow-up GP call where I was told everything was fine, are you anxious? I explained that the blood needed to be taken before 9am but it fell on deaf ears. By the end of the call the doctor bellowed ‘IT’S NOT YOUR THYROID’ and put the phone down.

I’ve also been keeping an eye on my blood pressure at home and it’s consistently raised.

A week or so after my NHS test I get severely dizzy to the point I can’t walk without dropping to the floor and call nhs 111 who gave me a same day GP appointment in the local hospital. After a 3hr wait the dr looked at me and said thyroid but then checked my health record to see TSH and says no it’s fine, can’t be. My blood pressure got flagged as it was very high, so I was told to see my own GP again. They send me for a precautionary ECG (they’re getting pretty annoyed with me at this point) and I get a 20s ECG (it missed my palpitations unsurprisingly). Knowing I’d not get to see the results for many weeks I snuck a look at the print out in the sealed envelope. It said ‘minor ST depression’ and ‘borderline ECG’. A bit of research and it seems to be a symptom of hypo. All the cards continue to stack up….

At a loss as what to do next, I go back to Medichecks to get a full thyroid panel, plus I add in female hormones, interested to check my cycle on HRT which has been all over the place recently. Bloods taken before 9am this time 😊

Results yesterday:

TSH 5.11 (0.27 - 4.2)

Free T4 14.8 (12 - 22)

Free T3 4.5 (3.1 - 6.8)

TPO 19.8 (0 - 34)

TgAbs 16.8 (0 - 115)

Hormones:

Oestradiol 432 (222-1959)

Testosterone 1.09 (0.29-1.67)

SHBG 70.9 (32.4 - 128)

FAI 1.5% (0.187-3.63)

LH 3.6 (14-95.6)

Prolactin 889 (102-496)

Questions

1. Is this hashis? What are optimal TPO/Ab levels?

2. If not, is this a problem higher up (hypo/pituitary)? I’ve had very high levels of stress with competitions which might explain my sudden crash afterwards.

3. I’m not overly worried about my low LH although id like it explained, but I’m past my reproductive years. I’m concerned about the high prolactin level.

4. If GP continues to gaslight where should I turn for help for hypothyroid? I don’t have much money but could maybe afford one private appointment with someone. Who would I see? Do I go down the nutritional/functional route or do I need someone more medical? I’m desperate to try some T4/T3 anything to help me feel better. Considering self sourcing.

Any help, insights welcome. And thank you for reading if you got this far 🙂

[greygoose]

Hi GussyG, welcome to the forum.

I'm afraid no-one can answer all your questions without knowing the ranges - which vary from lab to lab. But I can tell you that with a TSH of over 5, you are hypo, and there is something wrong with your thyroid. Unfortunatly, doctors - who know next to nothing about thyroid due to their limited education - believe that a TSH has to be over 10 for there to be a problem. But when you take into account that a euthyroid (i.e. with no thyroid problems) is around 1, you can see how wrong they are. But they don't listen to patients, considering us all to be idiots.

Unless they have considerably reduced the TPOab upper limit, you problem is probably not Hashi's, BUT you can't rule it out on the basis for one negative blood test because antibodies fluctuate all the time. Plus there are two Hashi's antibodies: TPO and TG. TGab can be positive even if TPOab are negative. Also, about 20% of Hashi's people never have over-range antibodies.

To be able to comment on a possible pituitary problem we need to see the ranges.

[GussyG in reply to greygoose]

Thank you so much greygoose. I’ve edited my post to add the ranges, apologies, I’m still getting to grips with the format!

I have another GP appointment to discuss my raised TSH this afternoon but I’m not expecting to get anywhere, based on the experiences I’ve read from everyone on here😔. I’m dreading it in fact.

[greygoose in reply to GussyG]

FT4: 14.8 pmol/l (Range 12 - 22) 28.00%

FT3: 4.5 pmol/l (Range 3.1 - 6.8) 37.84%

So, yes, your Frees are pretty low. Generally, when euthyroid, the FT4 is around 50% through the range, and the FT3 slightly lower. Yours are well below 50%, and your FT3 is higher than your FT4, which is often a sign that the thyroid is failing for some reason. It could be a pituitary problem because the TSH is low than one would expect given how low the Frees are. Unfortunately, doctors know nothing about any of that, and have probably never heard of Central Hypo (pituitary problem). But stress is unlikely to affect your pituitary. It's the adrenals that take the strain in times of stress.

It looks unlikely that your problem is a autoimmune one - although difficult to completely rule it out - but the numbers just wouldn't present like that. There is no optimal level for antibodies, they are either positive or negative. Yours are negative at the present time.

If GP continues to gaslight where should I turn for help for hypothyroid? I don’t have much money but could maybe afford one private appointment with someone. Who would I see? Do I go down the nutritional/functional route or do I need someone more medical? I’m desperate to try some T4/T3 anything to help me feel better. Considering self sourcing.

What you want is an endo that knows something about the pituitary to check it out - you won't get anywhere with your GP, that's for sure. She can't even do the right tests, an endo has to do them. So, to find the right endo - and it will probably have to be private - write another post on here asking for recommendations by PM. These knowledgeable endos do exist - although few and far between - because we have a number of members on here that have been diagnosed with Central Hypo.

Self-treating is tempting, I know. And a lot of us do do that. But, it's best to try for a diagnosis first to avoid complications in the future. It needs to be on your records that you are hypo. After that, if the treatment you get isn't satisfactory - and it often isn't - self-treating is always a possibility. But, try and find that endo first.

[GussyG in reply to greygoose]

Thank you so much greygoose that’s an incredibly detailed and helpful response. So much to learn and think about.

I saw the GP yesterday, I got sent to a random surgery in my borough and I was expecting the worst but I was delighted to be met with a young guy who listened to me and took me seriously. I discussed the timing of the NHS test and its accuracy and he said out loud ‘if that’s the case then we are missing hundreds of patients by not telling them to get thyroid checked in the morning’ (umm yes). He said he wasn’t aware of fluctuations in levels of TSH but would look it up. I nearly fell off my chair!!! I’ve resolved to return to him with some studies that shows it fluctuates. I’ve found one to show him on NIH, but if anyone else has any papers to back up a morning blood draw then I’ll take those too?

More good news, he mentioned I ‘could be’ subclinical hypo but TSH is only slightly raised. This is huge as all other doctors so far have said no, it’s not thyroid. I pressed him that I’d had x2 readings over 5 in the last 3 months. He’s thinking about it…I’ll press him further on this next time I see him.

Anyway, the biggest update is that he saw my prolactin level in the 800s and starting talking about pituitary problems and getting a CT scan and referring to a neuro and or endo. By this point I was ready to hug the man. So next up he wants me to do another blood test but early in the morning (yay) and if prolactin is still high he’ll refer. Meanwhile he also wants me to monitor BP twice a day and start BP meds if it doesn’t improve (not so keen on this).

Yes it’s just the start, but my god the difference when a doctor listens and takes you seriously. I came out smiling despite possibly having a pituitary adenoma 🤣 (worst case, I hope not!).

[greygoose in reply to GussyG]

Well, that all sounds wonderfully positive! Imagine him not knowing that the TSH fluctuated. That is a disgrace and his med school teachers should be ashamed of themselves!

Myself I don't have any papers discussing TSH fluctuations, but I would advise you to start a new post asking for just that, because not many people are going to read this thread, now. I'm sure SlowDragon must have something.

Do you know, I'm feeling quite excited for you! I hope he knows that TSH is a pituitary hormone. Keep on keeping us up-to-date because this is so up-lifting!

[GussyG in reply to greygoose]

Thank you! 😊

I lucked out this time, after 4 dreadful GPs. Will I see him again? I’m not sure, but I really hope so. The days are gone of being able to see the same GP for continuity of care as I’m sure you know. It’s only that my BP was high that they triaged me to see someone face-to-face. Had it been for my other symptoms like fatigue etc then probably not. I also wonder with him being fairly new how long he’ll last before burnout? I need to strike while the iron is hot 😂 (jokes aside, it’s exhausting).

I’ll make separate a post as advised for the TSH timing data.

Thanks again. Will keep the updates coming after my blood test next week.

[greygoose in reply to GussyG]

Well, fingers crossed that you do see him again!

I haven't had any personal experience of UK doctors for over 50 years, because I live in France. And I haven't seen one here since 2014. I find my health is a lot better since I gave up doctors! But, at that time, the system here was that you always did see the same GP. Now, I don't know, because finding a GP is like looking for hen's teeth. They just don't exist around here, for the most part. My GP retired in 2014 and was never replaced, so I don't even have a GP anymore.

[SlowDragon Administrator]

Anyway, the biggest update is that he saw my prolactin level in the 800s and starting talking about pituitary problems and getting a CT scan and referring to a neuro and or endo. By this point I was ready to hug the man. So next up he wants me to do another blood test but early in the morning (yay) and if prolactin is still high he’ll refer. Meanwhile he also wants me to monitor BP twice a day and start BP meds if it doesn’t improve (not so keen on this).

High prolactin is relatively common with Hashimoto’s at 20%

frontiersin.org/journals/im...

pubmed.ncbi.nlm.nih.gov/235...

sciencedirect.com/science/a...

[SlowDragon Administrator]

Timing of test

healthunlocked.com/thyroidu...

emeraldcityclinic.com/blog-....

[GussyG in reply to SlowDragon]

Thank you very much SlowDragon. I’m going to print these all out and add to my (yet to be created) folder of info/ammo. I read that another lady on here was successful in getting treatment from her GP when she took in her ‘evidence’ file. Worth a try…although I do foresee this is going to be a long journey.

Re: Hashimotos - do you think it’s worth continuing to monitor my TPO and antibodies? My TPO has been very slightly creeping up (10.4, 17.7, 19.8) but Abs staying around 15-17 (this is over 18 months).

I’m also waiting for a scan of my thyroid as it feels like something is tight, swallowing and talking, but no clue when or if I’ll get that on NHS. Might correlate with findings in second paper that thyroid volume is increased. Interesting.

[tattybogle]

onlinelibrary.wiley.com/doi...

General Error Analysis in the Relationship between Free Thyroxine and Thyrotropin and Its Clinical Relevance Simon L. Goede and Melvin Khee-Shing Leow

(* note ~ Thyrotropin= TSH , and L-T4 = Levothyroxine )

"2.1. Diurnal Variations in [TSH]

Biological variations are expected to occur in the [FT4] and [TSH]. A very important condition for TFT measurements is the time of day the blood is sampled as many hormone systems in the body exhibit natural circadian biorhythms dependent on time including the HPT axis. The diurnal rhythm of [TSH] plays an important role and exhibits a significant difference between morning and evening readings [8]. The reported variations in [TSH] levels are ranging from an average [TSH] of 1 mU/L at about 15.00 h in the afternoon to an average of [TSH] = 2 mU/L at about midnight. This reveals the importance of a repeatable defined measurement regime at a fixed time of day. Any measurement accuracy of [TSH] to the extent we have available loses significance if we ignore these effects.

The amount of variability is dependent on the individual in question, but the smallest interindividual variations in [TSH] are observed around 15.00 h in the afternoon [8].

In another study [9], it was evident that several persons being probed for FT4 after taking their daily dose of levothyroxine (L-T4) had different readings because of interindividual differences in pharmacokinetics and metabolism. Therefore it is important to probe a person already using L-T4 on a fixed time of the day before the intake of the daily L-T4 dose. For practical reasons, this can be done shortly upon awakening (i.e., prior to the ingestion of daily dose of L-T4) in the early morning between 07.00 h and 10.00 h. The same time interval for TFT assessment also applies to people being investigated for the first time."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

it is also a good idea to fast before the TSH test,,, no breakfast . tea coffee etc ,, just water until test:

THE NHS SAY THE TSH TEST DOES NOT NEED TO BE A FASING TEST ...

THIS SHOWS WHY IT SHOULD BE:

A recent paper showing that eating breakfast DOES lower TSH quite significantly:

bmcendocrdisord.biomedcentr...

Effects of calorie intake and sampling time on thyroid stimulating hormone concentration

Aimei Dong, Youyuan Huang, Yucheng Huang & Bing Jia (Published: 01 April 2022 in BMC Endocrine Disorders)

"Discussion

The findings of this study showed that the TSH level was reduced significantly by about 30% after calorie intake in the morning, The components of calories had no significant influence on TSH variation rate when the calories intake was similar. The TSH level was reduced slightly by 5.2% in the subjects after maintaining the fasting state. The rate of TSH reduction was significantly pronounced after calorie intake compare to the fasting state, suggesting that the influence of food on TSH was more evident than the diurnal rhythm of TSH.

The findings of this study showed that the variation of TSH level after calorie intake in the morning might influence the diagnosis of subclinical thyroid dysfunction. Subjects with subclinical hypothyroidism might be underestimated due to the non-fasting state.

Conclusion

In summary, the TSH level was reduced significantly after food intake, compared with that at fasting state in the morning. If the reference range of TSH used in the laboratory was from fasting blood samples, it would be better to evaluate the TSH level in fasting blood obtained in the morning compared with random or postprandial samples."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

and another more recent paper which confirms that eating lowers TSH levels ...see helvella 's post here ( healthunlocked.com/thyroidu... )

direct link to paper : cureus.com/articles/222188-... -effect-of-pre--and-postprandial-plasma-glucose-levels-on-thyroid-hormones-a-cross-sectional-study#!/

[GussyG in reply to tattybogle]

Fantastic thank you! The doctor isn’t going to know what’s hit him 😂. I hope he reads/listens and requests any future patients to get tested before 9am. Gotta hope right? This forum is incredible, I’m so glad I found you all ❤️