I decided to do a thyroid medichecks test as I have felt myself deteriorating since March. I can never seem to get on a level ground, after a few months of increasing my levo it happens again. My T3 is always on the low side and I did the gene test and it came back positive from one parent. I really think I need to increase again. I'm currently on 112.5mcg per day. My results are:
TSH 2.19 (0.27 -4.2)
T4 17.5 (12 - 22)
T3 3.4 (3.1 - 6.8)
Folate - serum 45.4 (8.83 - 60.8)
Vit B 12 - active 87.8 (37.5 - 188)
Ferritin 130 (30 - 150)
Vit D 127 (50 - 250)
My last bloods were taken in October 2022 at the doctors, which were:
TSH 1.33 (0.3 - 5.5)
T4 16.6 (12 - 22)
T3 3.6 (3.1 - 6.8)
Folate 18.3 (3.8 - 26.8)
Vit B12 672 ( 197 - 771)
Ferritin 134 (15 - 150)
Vit D 135 (50 - 144)
I was diagnosed in 2020 but can't understand why I start getting symptoms again and need another increase every few months, will it always be like this, thankful for any advice 😫
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Ladysmith53
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Thank you for the reply, and yes it does seem like a long time seeing as I'm doing everything possible to help myself after finding this site (which I am very grateful for!) I really thought it would have stabilised by now. I keep putting off going to discuss T3 with the doctor as it seems like a bit of a battle. But you're right I think I definitely need another increase!
T3 is a battle for sure, especially if you're going via the NHS. If you can possibly afford it private it is often much easier, although there are no guarantees.
Keep going as you are for now. Don't ask for T3 yet. You have room to increase your T4 and see how that settles.
I guess we all think we will be well in weeks when we start medication. Some are. But a lot of us, most of us on here, are having to invest years of effort into getting better. It's 8 or 9 years for me now. Very upsetting if you think about it, so I try not to. This site is a godsend.
Yes it certainly is a godsend, do not know where I would be now without the brilliant advice and help I have had. This is the worst my T3 has been since diagnosed it is only 8.11% through the range, it keeps dropping more and more every time, I am getting pretty desperate atm. Thanks for your reply 😊
Following along with this thread as I am in the same boat as the author. I would love if you could explain how to calculate the range percentages so I can figure out my own. I am due for blood work next week. I so appreciate the knowledge shared on this site.
Thank you again! I calculated my percentages and it's all very eye opening! Looking forward to taking the info to my ND in a few weeks. I am on compounded NDT and previous doc (for reasons I will not go into, as she made ZERO sense) had also added a small amount of T3. New ND wants to discontinue added T3 and dose NDT based on how I feel. It has taken a long time to find her and I hope she never retires!
jaydee I’m slightly confused how 3 years isn’t a long time to be hypothyroid for? A week even seems like a terribly long time when symptomatic!
As Paul Robinson says, we should be aiming to get better asap as this illness destroys lives. I know this isn’t possible without the right information and I’m not trying to be cold but the message should be that this is absolutely recoverable in less time than that as long as we are armed with the right knowledge. Although not as long as some peoples journeys, 3 years is still a travesty. X
I didn't mean to minimise your experience because I know very well that even a short time when hypo is like a lifetime.
Its more that things can change more in the early years as you are finding. Also you weren't optimally replaced in October 22 even when you had quite a low FT3.
Yes I did the Dio2 gene test and it was positive from one parent. Do you suggest I go down the t3 route rather than keep increasing levo?Thanks for the link of gp's 👍
I get t3 from nhs Endo so worth trying to get a referral there first before trying private route. Good way to get a referral is to be constantly at the doctor complaining how the symptoms are affecting your relationship with your partner,your ability to work etc. they seem to care more about this than just about how you feel!
Hi @SlowDragon, following on from this post this morning I have contacted the private Endo recommended on the list (who is also NHS) nearest to me, as I live in Sheffield, but he is no longer taking on any new patients. Is it worth asking my gp for a referral on the NHS? (which will probably be a long wait) Unfortunately there are no other consultants near me. In the meantime can I increase my levo without consulting my gp?
Some private endos are seeing patients remotely (zoom or whatever) so you don’t necessarily need to find an endo close to you unless you will only consider face to face. Once you have the list, and have found an endo who’ll see you remotely, post on here with their name in the title and if anyone has experience of seeing them they can private message you.
I am the same as you regarding the Dio2 from one parent. I would still advise you to try further T4 dose increases at this stage to see what you can do with it. T3 isn't a magic bullet for me, so don't rush in before you know you absolutely need to do so.
With FT3 as low as yours it's little wonder you are struggling.....I've been there!!
For good health almost every cell in the body needs to be flooded with T3 which is then available for uptake by the cell's T3 receptors.
Low cellular T3 = poor health.
The T3 needs to be available in an adequate and constance supply...which yours isn't.
Have you optimised vit D, vit B12, folate and ferritin all esential to support thyroid function/ conversion
You have room to increase levo but looking at your FT4 labs it would take a substantial increase to generate enough T3 to make a difference.
However having FT4 very high in range is not advisable long term ....it can be a cancer risk.
You still have room to safely raise levo.....aim to have FT4 roughly approaching 75% through the ref range.
I would first work on the nutrients and raise levo ...possibly in 2 steps to 150mcg.
It takes time....there is no quick fix!
If that doesn't help then you will need to start adding a little T3....which, given your circumstances should be prescribed by an endo.
You keep getting symptoms after an increase because your dose is still insufficient.
When we increase the dose the body thinks " yippee that's better" ...but that won't last if we are still undermedicated, so the symptoms eventually return signalling the body needs more hormone.
Once you are adequately medicated the symptoms should resolve
Listen to your body it will tell you if something is wrong
Thanks DippyDame that's really informative, my vitamin levels are usually pretty consistent, I have supplemented for the last 2 years with brilliant advice and help from this site.It makes total sense when you say after an increase the body adjusts initially but then it's not getting to the root of problem by needing extra t3 . I think it's time I approach my doctor to get a referral, thank you fir that!
your vitamin d levels have dropped to half way the range, in your previous test they were near the top. You might need to be one of those people (like me) that needs to be near the top. SeasideSusie would be best to advise re this.
Hi - I was on Levo and I was always either up or down. Increasing and decreasing my Levo, going to the doctors. Like you I found it almost impossible getting my T3 optimal without having a very high T4. Miserable.
I switched to Armour thyroid by going to a private doctor and haven’t looked back. It has taken a while to get my dosage correct but now I feel like a normal person. I also optimised all my vitamin levels as well before taking NDT and still supplement with D3/ B12/ magnesium/ NAC/ omega 3. This worked for me. My advice is don’t waste years of your life waiting for Levo to work - just my opinion.
have you checked your cortisol levels? Low cortisol can cause difficulty in getting stable on meds. The other could be slowed progress due to high RT3 from t4 containing meds and you would probably benefit from some t3. I was struggling to get my bloods to optimal due to low cortisol and a high rt3, I am now working my way up on t3 only.
Thank you for the suggestion Beau55, I haven't had my cortisol level checked since diagnosed, I'm speaking with the doctor on Monday so I'll mention them both x
I was diagnosed with Hashimoto disease 12 years ago and started the journey of now what the heck is all this about?! My primary symptom was just being tired all the time then my hair started falling out which really got my attention! My digestive track was all out of whack and I found minimum information out there and even less doctors to explain to me what I was going through let alone what I could do to help myself. I became a Googling fool and I found a functional medicine practitioner who treated my whole body looking for a root cause of this sucky disease. We had all sorts of tests performed, everything from food tolerances to mold toxicity. I ran the gauntlet. The doctor recommended a book by Isabella Wentz called 'Hashimoto's Thyroiditis, Lifestyle Interventions for Finding and Treating the Root Cause.' I swear, that book became my new best friend. I became a sticky note fool. Longer story shorter, I learned to help myself by doing a food elimination diet finding out which foods were hurting me. I ate a minimalistic diet of nothing but lean meat and vegetables for, get this, 2 years! When I started to feel better, I slowly started adding foods back into my diet...nuts, beans, milk, eggs, etc. I still have problems with the protein in eggs and I don't think I'll ever be able to eat gluten again. Weve tried other treatments, far too many to list here but the gist of what I have learned (and no doctor am I!) is Hashimoto disease has 3 different causes, Digestion, Inflammation and Genes. I couldn't do anything about my genes except whine to cousins, etc. about Gramma's legacy, but I could and did do something about my digestion which has helped enormously. Inflammation is an ongoing scenario but I'm better. I don't think I'll ever be able to go back to being what I once was and I still constantly learn, (Thank You Health Unlocked! for your contribution) but I just want to encourage everyone to be their own advocate. Never give up an keep digging at it. Sooner or later you can feel better. 😍
Jeez that's one heck of a journey you've been on, that is the problem with this disease, every individuals symptoms and causes are different and its the difficulties of fine tuning. Thanks for your input and although a long journey I'm glad you now feel better! 😊
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