Feeling grim

[elsiev32]

Just had my bloods back

Any help appreciated, seem to have lost my last post...

TSH... 1.8 range 0.27 - 4.2

T3... 3.2 range 3.1 - 6.8

T4.. 21.9 range 12 - 22

[humanbean]

seem to have lost my last post...

You can always find all your last posts and replies on your profile. You can find your profile by clicking on your name or your avatar/picture.

Alternatively, you can bookmark this link :

healthunlocked.com/user/els...

[SeasideSusie Remembering]

Elsiev32

When did you take your last dose of Levo before the test? Last dose should be 24 hours before the test.

Do you take any supplements containing Biotin, eg B Complex? If so this should be left off for 3-7 days before the test.

[elsiev32 in reply to SeasideSusie]

I left every off for 24 hours, they didn't tell me too but l did anyway x

[elsiev32 in reply to SeasideSusie]

I don't take any supplements

[SeasideSusie Remembering in reply to elsiev32]

elsiev32

So looking at your last post where you gave results of your nutrient levels, you were given suggestions of what to do about them:

healthunlocked.com/thyroidu...

Active B12: 45

Folate: 6.26 93.89 - 19.45)

Ferritin 25 (13-150)

Vit D - you didn't come back with result

So what's happening there? These all need addressing, thyroid hormone requires optimal nutrient levels to work properly and for conversion of T4 to T3 to take place.

As you have had a TT you may need the addition of T3 to your Levo but that can't be contemplated until you optimise your nutrient levels.

[elsiev32 in reply to SeasideSusie]

Vitamin D is 23

[SeasideSusie Remembering in reply to elsiev32]

elsieV32

Vitamin D is 23

If this is 23nmol/L then this is Vit D deficiency and needs loading doses from hyour GP followed by lifelong maintenance dose.

After the suggestions you were given last time about your dire nutrient levels, what is being done about them?

[elsiev32 in reply to SeasideSusie]

I was taking lots of Supplements until my Dr rang and told me l had Pancreatic Cancer. I stopped everything for a few weeks whilst l had no end of CT scans. Endoscopy, Colonoscopy, internal scans Ultrasounds etc. I am trying again for B12 but they say l am fine. Just awaiting her decision. She made an error and made her decision on blood tests instead of from the scan. Nothing has been found at present but l have lost a lot of weight..

[elaine2447 in reply to elsiev32]

How absolutely appalling to be told that and the anxiety it must have caused. I have received incompetence but not on that scale. For over 4 years, three monthly blood tests came back with the comment "above the normal range, to be expected"!!! Meanwhile my osteoporosis worsened a further 12 Percent and a private parathyroidectomy cost me my savings. I have hashimotos with hundreds of antibodies and a TSH 8.27 ignored of course. I hope you feel better soon.

[elsiev32 in reply to elaine2447]

Thanks. Same to you. My Osteo T score is - 4.8 in my Spine, they need to deal with the stuff going on not search for other problems

[elaine2447 in reply to elsiev32]

Sorry to hear that, my scores are about that too, even my forearm was -4.6 two years ago. I have a compression fracture at T5 from nearly 6 years ago, which is gives relentless pain, missed by the hospital when i was admitted as they didn't bother to xray me despite having a record of severe osteoporosis. Wandered around with "unexplained back pain" for 13 months before rheumatologist felt he should investigate! Can you believe,Gp's and endos still prescribing Denosumab after FDA gave out a warning 2017 and the UK govt only in 2020. Appalling, so some victims now have multiple spinal fractures. Take care.

[elsiev32 in reply to elaine2447]

Denosumab is what l am about to be booked in for 😮😮

[elaine2447 in reply to elsiev32]

No no no, please dont. It is supposedly a lifetime commitment apart from the side effects one might experience once on it. It is absolutely crazy, the ROS who I have no time for are still pushing it but then they have financial support from Amgen. I moderate a Facebook group for Osteoporosis, I will message you the link if you are on Facebook. In the meantime read this gov.uk/drug-safety-update/d...

[elsiev32 in reply to SeasideSusie]

I am having one heck of a battle with this new Dr at present

[humanbean]

TSH... 1.8 range 0.27 - 4.2

T3... 3.2 range 3.1 - 6.8 --- 2.7% of the way through the range

T4.. 21.9 range 12 - 22 --- 99% of the way through the range

In most people with thyroid disease or with a missing thyroid the Free T3 and Free T4 levels need to be better balanced than yours. For example, people might need T4 to be 70% of the way through the range and T3 to be 60% of the way through the range.

There are some people, who take T3 only, who feel best with T3 being extremely high in range or even a little bit over the range with T4 being zero or practically zero.

But nobody ever feels good with a T4 being top of range and T3 being bottom of range, like your results show, so it isn't surprising that you don't feel well.

In a healthy person with a healthy thyroid the thyroid itself would produce all your T4 and about 25% of the T3 that you need. The remaining T3 required would be produced by converting T4 to T3 within the tissues and organs of the body, for example, the liver, the kidneys and the intestines.

I don't know if you have a thyroid.

If you have a thyroid then it is producing very little T3.

And your tissues throughout your body are converting very poorly from T4 to T3.

Poor conversion is one of the most important things that every hypothyroid person on this forum struggles with and it is one of the big reasons for so many of us being here. Refusal to diagnose, under-medication or the wrong choice of thyroid hormone treatment are some other big issues.

I saw in your previous post that your nutrient levels are not good. That can seriously impact on your body's ability to convert T4 to T3. See what happened to my own thyroid numbers having improved my nutrient levels :

healthunlocked.com/thyroidu...

Your B12 is extremely low, your folate is very low, and your ferritin (iron stores) is very low. You don't have a vitamin D result.

With low ferritin it is a good idea to get an iron panel done before considering supplementation - it is possible to have low ferritin and very high serum iron, and supplementing iron in those circumstances would just make you sicker. I discussed this problem on this link :

healthunlocked.com/thyroidu...

Some of these nutrient problems we can treat ourselves. But if you have Pernicious Anaemia (PA) then treating your low levels of B12 might prevent you getting a diagnosis permanently. Supplementing folate can also reduce your chances of getting diagnosed with PA (if you do actually have it).

For more help on your B12 levels, you could join the Pernicious Anaemia forum on this site.

healthunlocked.com/pasoc

Note that many members of that forum treat their own B12 deficiency by buying B12 ampoules for injection online, and injecting themselves. This is what doctors should be doing/arranging for their patients with B12 deficiency but they don't.

If you don't have PA then you may be able to raise your level with a high enough dose of tablets, which are much easier to buy. But you would need to buy the right kind of B12 to maximise the chances of you absorbing it. (There are four different kinds of B12 that are used to treat deficiencies in various circumstances.)

[elsiev32 in reply to humanbean]

I had a Total Thyroidectomy but they have left some tissue behind. One of my Parathyroid glands was damaged during the op x

[humanbean in reply to elsiev32]

Well, whatever thyroid tissue you have left doesn't seem to be doing anything useful any more. You need to improve your conversion of T4 to T3 and almost certainly need some T3 added to your thyroid hormone dose if you are going to have any chance of ever feeling well again.

Many patients buy their own T3 online. It may be your only hope of getting it.

[elsiev32 in reply to humanbean]

To be honest l have got some from a friend but haven't a clue how much to take..

[humanbean in reply to elsiev32]

Take quarter of a tablet every day with your dose of Levo.

Assuming there are no ill effects and you adapt to the pills, after a couple of weeks, add another quarter of a tablet about 6 - 8 hours after (or before if you take thyroid hormones at night) your first dose.

Depending on your response to T3 you might find half a tablet daily is enough. But if you need more, after a couple of weeks start taking half a tablet with your Levo and keep taking the quarter tablet separately.

Keep doing this... adding quarter of a tablet after two weeks, but after you reach a whole tablet you need to stop increasing for 8 weeks and then do a private test which includes Free T4 and Free T3. Post your results on the forum and ask for feedback. Depending on how close to optimal you are and how you are feeling, you may have too stick to adjusting dose up or down by no more than quarter of a tablet from that point onward.

Some general comments...

1) To cut tablets, some people use pill cutters which you can buy easily from a pharmacy or online. Others prefer a scalpel or hobby knife. Don't buy knives with funny-shaped blades. Many scalpels come with spare blades which is useful. Something like this might be suitable :

amazon.co.uk/Modelcraft-Sca...

2) Some people split their dose of T3 into 2, 3 or 4 doses. Some people take it all at once. This is something that we all have to experiment with for ourselves, and what is true at the beginning may change with time. In the early days of me taking T3 I had to split it. Then over a period of several years (I struggled a lot with iron) I improved my nutrient levels. Then I discovered - hey presto - that I could tolerate T3 all in one go with T4.

3) Some people take T3 immediately before settling down to sleep and they find it helps them to get a good night's sleep. Some people hate taking T3 at bedtime because they say it keeps them awake. Again, it is up to you to experiment to make the most use of your T3 to your own advantage.

4) Please note that taking T3 will usually lower TSH, which upsets doctors. Avoid them as much as you can. Ask for advice about what to do if you are forced to see a doctor about testing. You may end up having to treat yourself with both T4 and T3 if your doctor gets too excitable about your TSH.

5) Please note that the body absorbs less(?) or excretes more (?) T4 when it has adequate amounts of T3, so your T4 level will drop. I don't think you need to alter your T4 dose when you start T3, but it may be necessary later.

6) Never change both T4 and T3 at the same time. If it backfires you won't know what caused the problem.

7) Please note that T3 (in amounts that people usually need it) is not dangerous.

Please read this link :

healthunlocked.com/thyroidu...

8) Some people get palpitations when they start T3, but the body does adjust given time. Quarter of a tablet of T3 won't last very long in the blood (it gets absorbed by the cells.) When it "runs out" in the blood some people get palpitations again. This usually only lasts a short time, then it disappears (until the next quarter of a tablet). But over time the body adjusts and speeding up of the heart or palpitations doesn't happen at all.

Good luck.

[elsiev32 in reply to humanbean]

👇

Pkt design

[SeasideSusie Remembering in reply to elsiev32]

But you should optimise your nutrient levels before starting T3.

[elsiev32 in reply to SeasideSusie]

Yep sure. No problem

[humanbean]

I think I wrote yesterday that you didn't need to reduce Levo before adding T3. I've changed my mind, sorry! I think you should reduce by 12.5mcg or 25 mcg per day, since your Free T4 is right at the top of the range. But don't be surprised if your Free T4 has dropped a lot next time you do testing. When T3 is added to a T4 dose it can reduce Free T4 even if the dose of Levo hasn't been altered.

So, if you reduce now, while your Free T4 is high in range, don't be surprised if you need to raise it back up again in the future after you've been taking T3 at a good dose for a few weeks.